Voices of Urban Aboriginal Peoples with Diabetes by Moneca Sinclaire A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Department of Leadership, Higher and Adult Education Ontario Institute for Studies in Education University of Toronto © Copyright by Moneca Sinclaire June 2018 Voices of Urban Aboriginal Peoples with Diabetes Moneca Sinclaire Doctor of Philosophy Department of Leadership, Higher and Adult Education Ontario Institute for Studies in Education University of Toronto 2018 ABSTRACT This art based research study is situated within an Indigenous research methodology. The goal of the research was to first, document the voices of Urban Aboriginal people with Type 2 diabetes and secondly, to bring together these voices into an updated oral format using the medium of radio. Four principles that grounded this research were Indigenous research paradigm, drawing from Indigenous scholars, critiquing the Euro-Western biomedical worldview of health, and reciprocity. Using an Indigenous research paradigm meant situating who I am as a Nahayowak (Cree) woman who used prayer, medicines and talking with Elders to carry out the research. Second, I ensured the bulk of the reference sources were Indigenous writers. Third, the research was undertaken knowing that health is situated in a colonial Euro-Western biomedical worldview and if the health of Indigenous people is to improve I must assert Indigenous ways of doing research. Finally, any work I do must have a component of reciprocity where knowledge and pragmatic tools, podcast of radio documentary, must be given back to not only the academy but to students and Indigenous community members. Reciprocity must be seen as the ‘gold standard’ in any work that Indigenous scholars do when working to change ii the situation of Indigenous peoples. The theoretical underpinnings of this research are four aspects of self, visually represented in the Nahayowak Medicine Model by Ghostkeeper as the mind, body, emotions and spirit. I was motivated to do this research when I found out 50% of my relatives had diabetes and when the Canadian Diabetes Association in 2002, and again in 2015, stated there is still a stigma associated with diabetes that prevents Aboriginal people from disclosing their diabetes. There were seven Indigenous people who agreed to participate because they also wanted to create a space for other Aboriginal people to be able to talk about diabetes without shame or guilt. They hope their story will allow others to share their diabetes story. The interviews became a radio documentary that ensured views were broadcasted about Indigenous people living with diabetes from an Indigenous perspective that was directed toward other Indigenous people. iii DEDICATIONS The two people I wish to dedicate this thesis to would be my mother, Jessie Mary Florence Whitehead-Sinclair and my brother Russell Joseph Sinclair. When I began this doctorate journey I received a phone call that the people who had murdered my brother Russell in November 1999 would be released unless we came forward to testify at the parole hearing, which was in Winnipeg, Manitoba. My sister and I went on behalf of our parents who were still grieving losing their son in such a tragic way. And near the end of completing the first draft of this dissertation my mother passed on with breast cancer. It is in their honor that I have kept on this path to complete this journey; and despite the unforeseen obstacles along the way I kept reminding myself that this journey is not just mine but it is for a higher purpose. Every day, since the descent of my mother and brother into spirit world I think about how they struggled with the demons of colonialism, how they did their best to live their lives. I remember my mother always would tell us, her children, we were Nahayowak and I remember her being very happy for me when I called her to let her know that I was at the protest walk in 1990 when Elijah Harper took a stand against the Meech Lake Accord. She said to me, “We were never given the chance to fight for our Indian rights.” I remember how proud she sounded. My mother, upon reflection, had instilled in me a Nahayowak worldview. Although I have British and Scottish ancestries, people would point out the Nahayowak background. When I was in the Western education system, although I was academically proficient, I had this inner struggle as I was constantly asking questions in my head when I would learn information that did not sit right with me. iv I also know that my brother Russell has always been with me as I wrote, as there were many long lonely nights when I could feel his presence around and encouraging me to continue. It is this same encouragement that he had instilled into his daughter, Jessica, who also made the decision to finish school. Before my mother died, I spent one month with her while she was ill and she told me, “Finish school.” Ke nuna’skamitin Jessie Mary Florence Sinclair (nee: Whitehead) Russell Joseph Sinclair v ACKNOWLEDGEMENTS I give thanks in the English voice with a Nehayowak heart and soul to the Creator for this life I have been given. I give thanks to the ancestors before me who never gave up our Nehayowak ways. I am truly thankful for the courage and foresight of my ancestors to know that one day our ways would continue to live. I also give thanks to Osani, a little boy, whose bright eyes and smile has kept me writing and thinking about what it is that I desire to leave for him when I pass onto spirit world. It is this story of perseverance and belief that I leave, a story he will not only hear but also read through this dissertation, from me when the time is right. He is also the young man who kept asking me, “Are you done your thesis yet, mom?” I also give thanks to the numerous family and friends who supported me in this journey through their encouraging words and nights they looked after Osani so that I could write and complete this phase of this journey. I thank everyone I know because you all helped in your own thoughtful way. Finally thank you for the committee for their support in this dissertation. vi TABLE OF CONTENTS DEDICATIONS ................................................................................................................. iv ACKNOWLEDGEMENTS ............................................................................................... vi TABLE OF CONTENTS .................................................................................................. vii LIST OF TABLES .............................................................................................................. x LIST OF FIGURES ........................................................................................................... xi LIST OF APPENDICES ................................................................................................... xii CHAPTER ONE: URBAN ABORIGINAL PEOPLES AND DIABETES ....................... 1 Introduction .................................................................................................................... 1 Diabetes and Urban Aboriginal peoples ........................................................................ 5 Beginnings collectively guiding my journey ............................................................. 5 Definitions of diabetes and urban Aboriginal peoples .............................................. 9 Purpose of study ........................................................................................................ 9 My Journey towards reanimating oral traditions ....................................................... 9 Summarizing Aboriginal methods as relevant to my dissertation ........................... 16 Summary ...................................................................................................................... 17 CHAPTER TWO: REVIEW OF WRITTEN LITERATURE .......................................... 19 Introduction .................................................................................................................. 19 Literature Review ......................................................................................................... 22 Historical changes to food and physical activity with Aboriginal peoples have contributed to the disease ........................................................................................ 22 Diabetes and Aboriginal peoples ............................................................................. 46 vii Urban Aboriginal peoples........................................................................................ 56 Aboriginal/Indigenous Worldviews/Knowledge(s) ................................................. 63 Reanimate oral traditions ......................................................................................... 70 Data analysis methodology...................................................................................... 79 Summary ...................................................................................................................... 80 CHAPTER THREE: ABORIGINAL/INDIGENOUS RESEARCH METHODOLOGIES ........................................................................................................................................... 81 Introduction .................................................................................................................. 81 Indigenous Research Methods ....................................................................................