Transformative Learning in the Multiple Sclerosis (MS) Community An Ethnographic Study examining how and in what ways transformative learning is realized and lived out among members of an MS community.

Mary N. Lewis, National-Louis University


The purpose of this study was to examine how transformative learning takes place in the lives of participants who are in the MS community with the hope of identifying coping strategies and motivational factors influencing transformative learning. This research also seeks to discover and examine the lived experiences, meaning and consequent changes made in the lives of the research participants. The focus of this research asks how and in what ways the learning process differs prior to and after a diagnosis of MS and how these individuals reconstruct their lives after experiencing the day-to-day challenges brought about by this disease.

It is the intention of this study to use Dr. J. Mezirow’s ‘transformative learning’ theory and Dr. R. Boyd and Dr. Myers view of transformative learning which is incorporated in the concept of ‘individuation’. The theoretical perspectives guiding this research which are: constructivism, critical reflection, the relationships between chronic illness, disability and MS and lastly the MSer and their relationships.

In an effort to collect and examine the daily experiences of a particular group of people or individuals this study is qualitative in nature. This research paradigm has been found to be a powerful instrument that aides in the understanding of individuals in the social and historical context in which they live, work and play (Merriam & Associates, 2002, p. xv). This research perspective will allow the researcher to focus on the “process, meaning and understanding” of the particular individuals and/or group under investigation (Merriam & Associates, 1998, p. 8) and will result in a large collection of descriptive material that will lead to a greater understanding of the participants' frames of reference and uncover unique interpretations of the meaning-making process. Patton (1985, p. 1) states that qualitative research “is an effort to understand situations in their uniqueness as part of a particular context and the interactions there”. Denzin and Lincoln (1998) explain that qualitative research further by providing a flexible approach to investigation by allowing the researcher to:

stress the socially constructed nature of reality, the intimate relationships between the researcher and what is studied, and the situational constraints that shape inquiry. Such researchers emphasize the value-laden nature of inquiry. They seek answers to questions that stress how social experience is created and given meaning. (p. 8)

Hence I will use the lens of critical ethnography to investigate to workings within and without this community. “critical” ethnography that investigates how the strictures caused by hegemonic powers with value-laden agendas” (Merriman & Associates, 2002, p. 236) effect and interplay with the “historical, social and economical situations” of a particular culture. Critical ethnography seeks to shed light on the “unfairness or injustice within a particular lived domain (Madison, 2005, p. 6) by examining the status quo and the taken-for-granted assumptions which entrench a particular group of individuals and bring to light the hidden operations of power and control that adversely affect or influence the group’s well-being physically, emotionally, socially and/or economically resulting in a diminished degree of personal and collective freedom and equality (Denzin. 2001; Thomas, 1993).

It is my intention in this study to use critical ethnographic principles to examine and explore the powerful underlying face by MSers in an effort to bring understanding, importance and validation to the views and experiences of those in the MS community who do not feel that their lived experience is of little worth to themselves and others. The development of “how power operates, of how social, political, and economic life is structured” is vital to the development of workable strategies and procedures through which “existing discourses and institutional structures can be restructured, if not revolutionized” (Inglis, 1998, p, 2).