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It's not just about HIV: An investigation of the Relationship of HIV Positive Wornen to a Northern Ontario AIDS Service Organization BY Ligaya Leticia Byrch Thesis submitted in partial fulfillment of the requirement for the degree of Master of Arts (MA) School of Graduate Studies Laurentian University Sudbury, Ontario O Copyright by Ligaya Leticia Byrch, 2000 National Library Bibliothèque nationale 1*1 ofCanada du Canada Acquisitions and Acquisitions et Bibiiographic Setvices services bibliographiques 395 WeUington Street 395. nie WelBngion OnawaON K1AON4 OttawaON KIAûN4 Canada Canada The author has granted a non- L'auteur a accorde une licence non exclusive licence allowing the exclusive permettant a la National Libraxy of Canada to Bibliothèque nationale du Canada de reproduce, loan, distribute or sell reproduire, prêter, distribuer ou copies of this thesis in microfom, vendre des copies de cette thèse sous paper or electronic formats. la forme de microfiche/film, de reproduction sur papier ou sur format électronique. The author retains ownership of the L'auteur conserve la propriété du copyright in this thesis. Neither the droit d'auteur qui protège cette thèse. thesis nor substantial extracts fiom it Ni la thése ni des extraits substantiels may be printed or otherwise de celle-ci ne doivent être imprimés reproduced without the author' s ou autrement reproduits sans son permission. autorisation. The philosophers have only interpreted the world in various ways; the point is, to change it. Karl Marx, "Theses on Feuerbach." In Marx and Engels, Colfected Works Vol. 5 Moscow: Progress Publishers, 1976. Acknowledgments First, I would like to thank the HIV positive women who participated in this research. It is these women's voices and experiences that informed this research. Further, this research could not have taken place without the assistance of the AlDS Service Organization (ASO). 1 am grateful to the staff and positive women who access the services of the ASO. 1 would also like to express my great appreciation to Dr. Gary Kinsman, who as my thesis supervisor provided me with guidance, advice, and encouragement. Gary provided me with a chance to explore theory and put it into practice, as well as Iistened to me during rough times, and became a voice to inspire me to help in the causes of others. I would also Iike to extend gratitude to my other thesis cornmittee members, Dr. Mercedes Steedman, who allowed me through a directed study class to explore notions of professionalism within non-profit organizations, particularly AIDS Service Organizations, and Dr, Jennifer Keck for her constant support- Thank yous must also be extended to Drs. Alan Sears and Anne Forest who both encouraged me to pursue graduate work. This research was partially funded by the lnstitute for Northern Ontario Research and Development (INORD). Finally, 1 would like to thank those who supported me in various ways; Robert Byrch Jr for his rich, powerful and inspirational words; Sarah for her friendship, patience, and support; Ginette and Jen for their laughter; Leticia Byrch and Robert Byrch Sr. for their love, and encouragement. Table of Contents Acknowledgments Abstract Summary Research Findings Recommendations i. Introduction The Research Problematic The Relationship of HIV+ Women to an AS0 as a Social Process Ethnography and the Standpoint of Women Feminism, Sociology for Women, Starting from the Standpoint of Women Critical Textual Analysis Research Strategy Ethical Considerations ii. Gender, Power, and AlDS Gender, and the Social Construction of Al DS The Taken for Granted Social Practices of ProfessionaIism, Ruling Relations and State Regulations of ASOs PowerIKnowledge Relations iii. History & Ethnography of HIV+ Women and the AS0 Northerfi Ontario, The History of the AS0 and The Social Dynamic of Women and HIVIAIDS in Northern Ontario 73 4 The Ethnography of the Relationship of HIV+ Women to the AS0 77 The Agency of HIV+ Women 8 Learning From HIV+ Wornen 78 The Relationship of the Staff of the AS0 to HIV+ Wornen and the Links to HIV+ Women's Lives from the Standpoint of the Staff iv. Conclusions The Shortcomings of the Research Recomrnendations for Change Hope for the Future End Notes References Appendix I Interview Schedule for fernale service users of AS0 Appendix IA Interview Schedule for staff and volunteers of AS0 Appendix II Consent and Release Form Appendix III Referral Script Abstract This thesis is based on the investigation of the social relationship constructed between women living with HIVIAIDS and a Northern Ontario AlDS Service Organization (ASO). Further, upon review of the Iiterature, this research is considered an important contribution to the existing literature since there has not previously been research conducted on the relationship of HIV positive (HIVt) women to a Northern Ontario ASO. This research started in November 1998 and the interviews were cornpleted in Decernber 1999. 1 utilized a feminist, ethnographic approach, namely a Sociology for Women, as developed by Dorothy Smith (1987). This investigation was conducted through open-ended. one-on-one intewiews with HIV positive (HIV+) women who currently access a particular Northern Ontario ASO. Staff of the AS0 were also interviewed. The information and anaiysis presented here is based on interviews with eleven people. Six of the people interviewed were HIV positive (HIV+) wornen and the rest were staff of the ASO, including a previous Women's Project Coordinator. One of the major findings as a result of this research was that the socially mediated or mutually constructed character of the HIV positive woman's life is organized through several social relations she participates in throughout her life. This is not only in terms of her HIV status. but also in relation to class. race, poverty, rnotherhood, and injection drug use. Thus, the socially mediated character of each woman's Iife rnust be considered when providing services for thern. The social process of the relationship of positive women to a Northern Ontario AS0 becomes "professionalized" in character, and it is this "professionalized" character which can prevent women from accessing the services of the AS0 fully, because it marginaiizes positive women by creating a "division" between staff and positive women trying to access services. Another research finding is that the social stigrna of HIV/AIDS still greatly impacts upon women making use of services creating alienation far the women who feel outside the homosexualized HIVIAIDS programming or activities, and therefore do not often use its services. Finally, the notion of a "good" versus a "bad" client serves to marginalize some positive wornen in that sorne women are treated differently from others and may even gain different support because of the identity of "bad" or "good" attributed to the HIV positive woman. Summary This thesis is a preliminary investigation of the relationship of women living with HIV infection to a northern Ontario AlDS Service Organization (ASO). The information described and analyzed in this thesis was obtained through interviews with eleven people, six with wornen living with HIVIAIDS, four with staff, and one with a woman who was the 'Women's Project Coordinatof' at the AS0 approximately five years ago (1994 - 1995). Most of the HlV+ women interviewed are between the ages of 20-44, unemployed, and experiencing constraints on their ability to access services due 20 poverty, child-care needs, addictions and drug use, and previous abuse. This thesis focuses attention on the effort and activity HIV+ women develop in order to socially construct their relationship with the ASO. Considerable energy goes into an HlV+ wornan socially organizing her relationship with a northern Ontario ASO, The way in which an HIV+ wornan organizes her relationship is also required for her ongoing health and survival. A finding of this research was that HIV+ wornen definitely had a "reiationship" with the AS0 but this retationship was indicative of the social location/positioning of these HIV+ women. Thus, the relationship of the HIV+ women accessing the services of the AS0 was often mediated through several aspects of her life for instance, class, gender, poverty, level of education, her children, her family, sexual activity, and religion. The relationship is further burdened by the stigma of HIV/AIDS, something which profoundly affects 8 women. especially marginalized women (Mykhalovskiy and Smith, 1994: 16). Therefore, the mediated character of HIV+ women's lives socially organize and inform their lives and their relationship with a northern Ontario ASO. The use of an institutional ethnographic analysis helps to rneld together the broader social analysis and the local analysis of the relationship of HIV+ women to a Northern Ontario AS0 by learning from the everyday social experiences of the people interviewed. This research is developed around the notion that the relationship of HlV+ wornen to a Northern Ontario AS0 cannot be analyzed in a closed or cut-off fashion but rather, it must be analyzed in terms of its connection with targer social processes. Research Findings The professionalized character of the AS0 can prevent wornen from accessing services fully, but also becomes taken for granted by the HIV+ women and staff of the ASO. The socialiy mediated character of HIV positive women's life is mutually constructed through several social relations and not just her HIV status. This must be considered when providing services for thern. For instance, how do we begin to get HIV+ wornen to start thinking of their own needs and wants and not those of the significant others in their Iives? How can we transform the work we do with HIV+ women to account for the mediated character of their lives? The social stigma of HIVfAIDS acts as a barrier for women in fully accessing the AS0 and its services and programs. The notions of a "good" versus a "bad" client serves to undermine the life experiences of HIV+ wornen and separates sorne of the HIV+ women out from others as "bad".