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Stockholm Institute of Education
The Disability and Handicap Research Group, Sweden
The present study intends to show an example of the usage of the lifeworld concept by presenting lifeworlds of people with aphasia, through their impressions, from communicating through a high-technological medium like video-telephony. Technology has been a major prerequisite for the study. The study argues that it is possible to use qualitative research methods when using an intermediate medium in a field trial, which tackles the second of the two main problems of ICT mentioned below.
The usage of Information and Communication Technology (ICT) in clinical work offers two main problems:
1. Inaccessible technology
2. Deviating user-experiences of quality from a so called "normal" situation
The problems have been encountered in the present study, primarily based upon a longitudinal trial project, where the aim has been to study language training for people with aphasia, using the special form of ICT called telematics in the form of videotelephony. The project was designed as follows. Two videophones were installed, one at the offices of a local Aphasia Society and the other at the office of the project-coordinator. The sites were at a distance of 300 kilometres from each other and connected through an ISDN link. A group of people with aphasia were invited to participate in a series of formally traditional language training sessions where they would be at the place of the first videophone and meet with the project leader over the network at a distance. The project resulted in more than 1.100 sessions (Magnusson, 1995, 1999) and forms the baseline for this study.
The theoretical approach of the study is phenomenological in the sense that it has been based upon the original Husserlian conception of the lifeworld in combination with the idea of the lived body and the ideas of bodily perception as described by Merleau-Ponty (1967) and partly the idea of Bachelard (1938; 1964) that people are striving to inhabit a "room" of comfort, a phenomenological metaphor for human life in general.
The first part of the study presents the pre-understanding of the researcher in the form of an extensive background description of the different areas of interest related to aphasia and to the researcher's work with aphasia. The concept of aphasia is described according to the three main aphasia categories, Broca, Wernicke and Global and the four treatment perspectives, biological, linguistic, functional and holistic, where a holistic perspective is seen as a synthesis between all the perspectives. Since aphasia is an acquired phenomenon, a special focus is put on the perspective of aphasia as a loss.
The second part of the study describes the concept of communication as described by Merleau-Ponty as the human activity which includes speech and language and which is a synthesis between those two faculties where the body exists in that synthesis or could be said to be that synthesis.
The third part of the study focuses on the concept aphasia therapy or treatment by discussing four different general aspects of aphasia - educational, sociological, technological and therapeutical aspects - which are of central interest to the study. We expect people with aphasia, just like any other people, to learn, to exist in a social context, to use tools and to be treated for possible problems within those contexts. Examples are presented of activities that have been made out from all these four aspects and it can be seen that even though there has been educational and socially oriented work for and with people with aphasia, the therapeutical and also the technological work dominates today.
The fourth part of the study presents the theoretical phenomenological framework by describing briefly different "schools" of phenomenology which have influenced the study, by presenting the main philosophers from each "school". Husserl created the concept and a simplification of his reductional method and his lifeworld concept lie at the very core of the study. Merleau-Ponty, has given the largest inspiration and impulse to the study with his idea of the bodily perception of the lifeworld or as he described it - the lived body. The fact that he wrote about aphasia also makes him especially interesting. American phenomenologists like Don Ihde (1990) have presented concrete methodologies as well as treatises on the concept of technology as such.
The main methodological problems of phenomenology are of two kinds. How do you get data about someone else's experiences without ethnographical inclusion or hermeneutical interpretation. The problem has been especially clear in this study since people with aphasia often have a way of communication that is difficult to understand, according to the definition of aphasia as a communicative disability. Making a description without (subjective) interpretation is a major problem in this case as well as finding valid situations where the lifeworld descriptions can be collated. Is the problem of validity even "valid" when doing phenomenology?
Looking into available data from the scientific community regarding methodology shows that participation has been used in certain studies and that interpretation is unavoidable. When talking to and listening to people with aphasia it is necessary to remember that the body is the communication, as Merleau-Ponty puts it. When listening to a person and getting a picture of his or her experiences the Husserlian reduction is a good tool to use not to over-interpret the immediate impressions which are the foundations of the phenomenological process.
Data from the initial project have been the baseline for the present study, as mentioned above. Two tools were designed to study the data, designed from the background pre-knowledge. The first tool consisted of a structure of five themes from which the description of the main structure of the lifeworld has been made. The themes are communication, learning, the social world, the body and technology and they could be considered as a synthesis of the preunderstanding or conceptions in the background. It is clear that in a phenomenological study the "I" is the most important concept, in this case the participants in the project and the author of this report.
The second tool simply has been a very detailed description of the people involved in the study. All the participants of the project have been described in terms of communicative behaviour and abilities including a rough analysis of their aphasia, as a function. The three concepts Broca (non-fluent), Wernicke (fluent) and Global aphasia (non-speaking) have been used. Out of the tools the comments of the persons with Aphasia have been grouped into the five different themes and presented as a synthesis of a common life-world, which has been presented both as a set of individual descriptions and as a more general model of the basic things which might constitute a more general lifeworld for people with aphasia.
Finally the study has given a partial answer to the two basic problems of technology as mentioned above, since the participants have experienced the technology as gradually becoming invisible to them. Then technology does represent neither a hindrance nor a lessening of the the quality of the communicative situation between a person with aphasia and his or her partner.
Bachelard, G. (1938; 1964) The Psychoanalysis of Fire. Boston, Beacon PressIhde, D. (1990) Technology and the Lifeworld. Midland Book, Indiana University Press
Magnusson, M. (1995) VideotelePhony for People with Aphasia. San Francisco, In Murphy, Harry (Ed) "Virtual Reality and Persons with Disabilities", 3rd Conference, 1995
Magnusson, M. & Christensen, M. (1999) Virtual Networks for Language Therapy, Husita conference 1999-08-29-09-01, Budapest, New Technology in the Human Services 12(1999)1/2, pp 47-52
Magnusson, M. (1999) Virtual Language Training for People with Aphasia, University of Joensuu, Faculty of Humanities, In: Nenonen, Marja & Järvikivi, Marja (Eds) (1999) Languages, Minds and Brains , Papers from a Norfa Summer School, Mekrijärvi, Finland, June 22-29, 1998, pp 101-103
Merleau-Ponty, M. (1967) Phenomenology of Perception New York, Routledge & Paul
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