Booklet 1: Theory and Method
This booklet describes the projects objective and explains the theoretical and methodological reflections we have carried out both before and during the execution of the project. We also explain how informants were selected and how their sight and hearing status was established at the beginning and the end of the project. Finally, we have collected the most important points from the five booklets that cover the main issues in a deafblind person’s life.
The objectives of the project are:
- To undertake a systematic collection of own experiences of deafblind persons over a 5-year period, during which their impairment is expected to progress
- To gather insight about the consequences a progressive hearing and sight disability can have on the deafblind person’s possibilities of creating and maintaining relationships and, by extension, of participating in society
- To build up new knowledge, that later can guide the professionals who will counsel the deafblind, their relatives and care professionals
The aim is to let a group of deafblind persons talk about the consequences the progressive hearing and sight disability has had on their possibilities of living the live they wish. The starting point was that the narratives should permit the analysis of the changes occurring in the deafblind persons’ lives, and the conditions of communication from the perspective of the individual and the society.
The individual perspective involves focusing on the narratives about daily life, about how small practical tasks such as shopping or repairs at home are carried out, the relationship with family and friends and leisure activities. This part also includes narratives about the disability, about expectations, consideration, reflections about the Usher diagnosis and about insecurity. To end, emphasis has been placed on narratives that show how individual ways of acting can strengthen or compensate the functional reduction. For example, we can observe that the use of aids such as a contact person, a white cane, hearing aids and so on, is closely related to the acceptance of the disability.
Society’s perspective involves focusing on how the deafblind persons experience the fact of being met by relatives and colleagues, as well as in their local environment, together with the general possibilities of participating in social life. In this project, we have stressed the fact that being disabled is not a condition you find yourself in regardless of the context. Quite the contrary, a disability stands out when compared to other people and in situations where one is active. This means that a person’s disability must always be seen in context.
We have focused on narratives where the disability becomes an obstacle to family communication and to the possibilities of participating in the local environment. Finally, we have contemplated what possibilities and limitations deafblind people experience in relation to participating in society, what options they have regarding transport, education, getting a job, and what consequences the disability has for their daily lives.
A fundamental aspect of the project has been to focus on the deafblind person’s own narratives about their experiences with a progressive disability. We have decided to let the stories about the interaction between the individual and their social and physical environment take centre stage. We have also focused on which resources, both individual ones and those in their environment, contribute to create action possibilities for the individual.
Consequently, our project has become a narrative about how different people with Usher diagnosis live their lives, and how they need to be met in different ways by all the people that they may become dependent upon in different ways as their disability progresses.
The projects target groups are, in the first place, professionals with direct contact with deafblindness. Secondary are other groups of support with little or no knowledge about deafblind persons or their relatives. We have issued six booklets instead of a comprehensive report because we have tried to address the need to be able to analyse individual issues in depth.
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