Men with multiple sclerosis : a study of a mutual self-help support group : a thesis presented in partial fulfilment of the requirements for a Master of Arts Degree in Social Anthropology at Massey University

Abstract

Multiple sclerosis is a condition that affects about twice as many women as men. I am a man with multiple sclerosis (an insider in this work) and my aim within this thesis is to relate the stories of our involvement within the support group environment. For the purpose of examining the individual and group process, I have found it useful to adopt a combination of narrative and feminist post modernist methods for understanding our ways of knowing and systems of helping. I was influenced by women of colour who argue about patriarchy and post colonialism to guide my thinking about the oppression of people with difference. The guiding principles of my study are inclusion, participation and emancipation. Inclusion occurred through involving the entire group in the research process. Active participation ensured that the theory presented in this study was grounded in the experiences of the individuals. Emancipation was achieved through presenting the voices of participants and working to provide better conditions for those concerned. This is an in-depth study of eight men who meet on a regular basis to share our interests, and life stories. We are people who are searching, surviving, succeeding and/or failing in our daily tasks. We are guys who are rational thinking human-beings and are just trying to be "normal" and included in our community. This thesis examines the process of surrendering power and the ways in which this causes the alienation of this group of individuals by our wider society. It looks at the social constructions of our disability, the fears, the chaos, dependency, our identity, and/or our visibility. Then we look at our "seizing the moment", through the process of reclaiming some of that power and control for ourselves through the benefit of mutual social support using camaraderie; the genuine need to help and care for each other and to be concerned. It is evident how our struggles and problems are not that dissimilar from other groups, for example, the emancipation of women and the plight of indigenous peoples. The discipline of social anthropology, being located within the humanities, provides an ideal base for studying the interconnections between oppressed groups.