DST Women’s Health Advocacy Tool 1 Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories Shelley Wiart 2929543 INST 390 Individual Directed Research Projects Dr. Josie Auger Athabasca University 16 September 2020 DST Women’s Health Advocacy Tool 2 Preface This research paper is an original, unpublished, independent work by the author, Shelley Wiart. The research outlined in this paper is covered by Ethics File number 23355, issued by the Athabasca University Research Ethics Board (AUREB) for the project “Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories” on March 25, 2020. This research also received a Northwest Territories Scientific Research License number 16553, issued by the Aurora Research Institute on May 29, 2019. Positioning Before I begin sharing my findings about Indigenous women’s digital health stories and how this decolonized research contributes to reconciliation in health care, I first need to position myself in this pursuit. As an Indigenous researcher, my positioning honours the “Indigenous ideological understanding of the world predicated on relationality and agency” discussed by Martin (2017). I accept the responsibility to respectfully locate myself within this research process and in relation to the communities and women that I worked with co-creating digital stories. I am Métis and a member of the North Slave Métis Alliance, Yellowknife, Northwest Territories (NT). I have long-term community relationships and ties to both treaty six (Lloydminster, on the border of Alberta and Saskatchewan) and treaty eight (Yellowknife, Northwest Territories) through my health promotions program, “Women Warriors” and as a member of the North Slave Métis Alliance. It is my honour to work in collaboration with Indigenous communities to seek self-determining and culturally relevant solutions to improving the quality of life for Indigenous peoples across Turtle Island. I am aware of the challenges and rewards associated with creating ethical re-search spaces for decolonizing Indigenous health research. DST Women’s Health Advocacy Tool 3 Table of Contents 1. Background……………………………………………………………………………….5 1.1 Timeline………………………………………………………………………………7 1.2 Indigenous Feminism & Praxis……………………………………………………….8 1.3 Insurgent & Decolonized Research…………………………………………………...9 1.4 Story as Indigenous Methodology…………………………………………………...12 2. Literature Review………………………………………………………………………...15 2.1 Indigenous Digital Storytelling ………………………….…………………………..15 2.2 Indigenous Knowledge Translation………………………………………………….16 2.3 Cultural Safety in Health Care…………………………………………………….…18 3. Research Findings on Digital Storytelling………………………………………...……..20 3.1 Method & Analysis…………………………..………………………………………20 3.2 Results on the Digital Storytelling Process …………….............................................21 3.3 Discussion on the Digital Storytelling Process ……………………………………...24 3.4 Results on Indigenous Knowledge Translation……………………………………...30 3.5 Discussion on Indigenous Knowledge Translation…………………………………..33 4. Our Medicine Bundle Is Our Own Life……………………………………………….…37 4.1 Self-reflectivity………………………………………………………………………37 4.2 Relational Accountability……………………………………………………..……..40 4.3 Ethical Re-search ……………………………………………………………………45 5. Conclusions………………………………………………………………………………48 References………………………………………………………………………………..53 DST Women’s Health Advocacy Tool 4 APPENDICES A. Interview Guiding Questions……...…………………………………………..……..58 B. Interview Consent Form……………………………………………………………...60 C. Continued Consent Form……………………………………………………………..62 D. Audience Questionnaire for Indigenous Women’s Digital Health Stories ……...…...64 E. Lily’s Self – Reflectivity on the Interview Process.……………………...….………..65 F. Reference Letter for Maxine Desjarlais for Habitat for Humanity…………….……...67 LIST OF FIGURES 1. The Digital Health Stories Titles & Participant’s Self-Identification…………............8 2. Digital Storytelling – The Digital Storytelling Process Themes……………………..22 3. Digital Storytelling – Indigenous Knowledge Translation Themes………………….30 DST Women’s Health Advocacy Tool 5 Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories 1. Background Indigenous women’s health stories are complex due to their intersecting identities of race and gender, their experiences of colonialism, and social determinants of health. All of these factors can make it challenging for them to access culturally appropriate healthcare. Indigenous peoples make up approximately 3.8% of the total population of Canada with the three distinct groups represented as: 60% First Nations, 33% Métis, and 4% Inuit (Kirmayer, & Valaskakis, 2009, p. 4). Indigenous peoples experience a higher burden of some chronic illnesses, a wider gap in health disparities and a significant gap in life expectancies in comparison to non-Indigenous peoples (Kirmayer, & Valaskakis, 2009, p. 6). Health care providers often fail to create an environment of cultural safety, defined as an outcome where Indigenous peoples feel respected and safe from racism and discrimination when they interact with the health care system (GNWT, 2018). Moreover, health care providers may not understand the holistic health needs necessary to support Indigenous peoples, and the systemic racism within the health-care system continues to contribute to health inequity and reinforces disparities (GNWT, 2018). In order for health care providers to have respectful relationships with Indigenous peoples, they must honour the diversity among cultural groups and have an appreciation of the depth of First Nations, Metis, and Inuit concepts of “good health.” Historically, through colonial policies like the Indian Act and the imposition of patriarchy on matriarchal societies, Indigenous women have been, and continue to be, marginalized by main-stream society (Dodgson & Struthers, 2005). A consequence of this marginalization is health disparities between Indigenous and non-Indigenous women. Indigenous women DST Women’s Health Advocacy Tool 6 experience higher rates of chronic illnesses such as diabetes and heart disease, and have lower life expectancy, elevated morbidity and suicide rates in comparison to non-Indigenous women (Bourassa, et al. 2004). Indigenous women past the age of 55 are more likely to report fair or poor health compared to non-Indigenous women in the same age group. (Bourassa, et al. 2004). Furthermore, social determinants of health for Indigenous peoples reflect major disparities in relation to non-Indigenous Canadians including “higher levels of substandard and crowded housing conditions, poverty, and unemployment, together with lower levels of education and access to quality health-care services” (Greenwood, et al., 2018). Furthermore, access to health care is a barrier for Indigenous peoples living in remote areas – a higher percentage of Indigenous peoples have unmet health care needs in the North – and the health care system lacks culturally appropriate services that do not account for Indigenous culture nor language (Loppie & Wien, 2009, p. 19). To close the gaps in health outcomes between Indigenous and non-Indigenous communities in Canada, it is critical that Indigenous people’s voices are central to the process of reconciliation in healthcare1. Reconciliation in healthcare aims to close the gaps in health outcomes that exist between Indigenous and non-Indigenous communities, and support Indigenous peoples as they heal from colonization, the legacy of residential school, and the ongoing systemic racism embedded in our institutions. Indigenous women’s knowledge is integral to sustaining traditional knowledge systems and healing practices, and to decolonizing knowledge production (Kermoal & Altamirano-Jimenez, 2016). 1 Reconciliation in health is recognized in two documents that serve as a framework for reconciliation across Canada and internationally: The United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) Article 24, and The Truth and Reconciliation Commission of Canada’s Calls to Action (2015) #18-24. DST Women’s Health Advocacy Tool 7 In this paper I examine how the use of Indigenous digital storytelling (DST) within the framework of Indigenous research methodology, allowed Indigenous women to share their health stories in a safe and respectful context. This decolonizing methodology allowed for selfrepresentation that challenged stereotypes and allowed Indigenous women to prioritize their own social and community needs and to protect their identities and cultural values in the process (Iseke & Moore, 2011). The digital storytelling participant interviews, which is the data this paper is based upon, reveals several key aspects of conducting culturally relevant and ethically sound DST with Indigenous women including: findings and discussion on the process of DST, and the Indigenous knowledge translation (iKT) event, Legacy: Indigenous Women’s Health Stories. In the last chapter, I will situate myself within this re-search2 and share my selfreflectivity through Absolon’s (2011) Petal Flower framework starting with “The Flower Centre: Self as Central” to the Indigenous research process (pp.67-69). I will also highlight my “relational responsibility” to my co-creators – my continued advocacy for Indigenous women’s health using their digital stories - and how I included them in this process as much as possible (Gaudry as cited Strega and Brown, 2015, p. 256). 1.1 Timeline From May to June 2019, I co-created two digital health stories with Indigenous women from the Women Warriors3 programs in Lloydminster and Onion Lake Cree Nation (OLCN), on the border of Alberta and Saskatchewan. I relocated to Yellowknife for the months of July and August and co-created three digital stories with Indigenous women there. We held an Indigenous knowledge translation community event, Legacy: Indigenous Women’s Health Stories, where we 2 A term coined by Indigenous academic, Absolon (2011) to reflect the concept of research through as Indigenous paradigm of “rewriting” and “rerighting” our own stories and positions in history (p. 27). 3 Women Warriors is an Indigenous focused holistic health program aimed at improving Indigenous women’s health outcomes. Shelley founded the program in 2015 in Lloydminster and it expanded to Onion Lake Cree Nation, on the border of Alberta and Saskatchewan and the City of Calgary in 2018-2019. DST Women’s Health Advocacy Tool 8 premiered the five digital health stories on Thursday, August 15th, 2019 at 6 pm – 8 pm at Northern United Place, Yellowknife, NT. (see figure 1). With the consent of the storytellers, I hosted their digital stories on my website: www.womenwarriors.club for one year (September 2019-September 2020). During the month of April, I contacted the storytellers to ask for consent to be interviewed about their digital storytelling research journeys; the five storyteller interviews were conducted during the month of May. During the month of August, I contacted each storyteller asking for their continued consent to host the digital stories and all five consented (Appendix G). Figure 1. The Digital Health Stories Titles & Participant’s Self-Identification Fragmented by Maxine Desjarlais Broken Trust by Beatrice Harper Secrets Revealed by Sheryl Liske Living Our History by Dorothy Weyallon Tuqurausiit by Tanya Roach Self-identifies as Métis and was raised on Fishing Lake Métis Settlement. Member of Onion Lake Cree Nation, Saskatchewan. Member of Yellowknives Dene First Nations. Member of the Tłı̨ chǫ Nation & a resident of Behchokǫ̀. Yellowknife resident formerly from Rankin Inlet, Nunavut. 1.2 Indigenous Feminism & Praxis I conceived of this project as community-based, participatory action research carried out through the lens of Indigenous feminism, which center the participant as the person most knowledgeable about their own experiences (Green, 2017). As such, I did not form hypothetical questions about their lived experiences, as I did not position myself as the expert. Green (2017) states, “Indigenous feminism is a theoretical engagement with history and politics, as well as practical engagement with contemporary social, economic, cultural and political issues. Indigenous feminism interrogates power structures and practice between and among Indigenous peoples and dominate institutes. It leads to praxis –theoretically informed, politically self- DST Women’s Health Advocacy Tool 9 conscious activism” (p. 16). The Indigenous feminist paradigm “seeks to provide an analysis of Indigenous women’s particular experiences of oppression and offers some prescriptions of a post-colonial future for Indigenous peoples. It is anti-oppressive in its intellectual and political foundations.” (Green, 2007, p.16). The storytellers shared the intergenerational impacts of colonization on their families and communities, how they navigated colonial systems to protect themselves and/or their children, and asset-based stories about the strength, beauty, and resilience of their land, language, culture and communities (Smith, 1999). The objectives of these health stories were to allow Indigenous women to share, with a medical audience4, their traditional knowledge and Indigenous healing practices, and to help them conceptualize and communicate about their own health stories and service needs. It also served to educate nonIndigenous people about traditional healing practices for different Indigenous groups, bridging the gap between biomedical western medicine and traditional healing. The praxis embedded in the digital stories is their calls to actions for medical professionals on how to provide more culturally safe care for Indigenous peoples. The digital stories and the data from these interviews are an anti-oppressive practice by virtue of critically examining the power imbalance inherent in western medicine and health care and allowing the storytellers to offer recommendations for a post-colonial future of Indigenous peoples’ concepts of holistic health and decolonized healing practices. 1.3 Insurgent & Decolonized Research Gaudry’s (2015) insurgent research principals formed the foundation for this community based participatory action research including: grounded in and respectful of Indigenous worldviews; the output (digital stories) were intended for use by the Indigenous women 4 Shelley Wiart presented these digital health stories to medical professionals and government employees at the Government of the Northwest Territories Cultural Safety Training Pilot Program in Yellowknife, NT, November 2019. DST Women’s Health Advocacy Tool 10 involved; the researcher was responsible to the storytellers for the decisions they made and the storytellers were the final judges of the validity and effectiveness of the digital stories; and, the research was action-oriented and inspired direct action in Indigenous communities (as cited in Strega and Brown, 2015, p. 248). The five digital stories are reflective of the cultures and landbase of each of the storytellers and the digital storytelling process was done in co-creation with the re-searcher. This paper examines the validity and effectiveness of the digital storytelling process, and the output, the digital stories themselves, through the storyteller interviews. Moreover, the data provides insights about the Indigenous knowledge translation events – the action-oriented and direct action process – of this research. It also highlights the storytellers selfdirected knowledge translation & implementation of their own digital stories. The “insurgency” enacted by this research meaning the “collective challenge to the oppressive status” was the Indigenous knowledge translation event screenings including Legacy: Indigenous Women’s Health Stories (August, 2019) and the Government of the Northwest Territories (GNWT) Cultural Safety Training5 (November, 2019) (Gaudry as cited in Strega and Brown, 2015, p. 248). The GNWT audience members provided feedback on the digital stories that allowed for their own critical self-reflection on power, privilege, and reconciliation within health care (Appendix I). I was aware of and avoided at all costs the detrimental impacts of “extraction research” that Gaudry outlines in his insurgent research paradigm (Strega and Brown, 2015, p. 245). I knew to clarify with each storyteller what knowledge I was allowed to record and use in the research process, and what was considered sacred knowledge that was not meant for academic purposes. For example, Gaudry cites an incident with a non-indigenous ethnographer pressuring 5 Chapter 5 Questionnaire Results From the Government of the Northwest Territories Cultural Safety Training Pilot November 2019. DST Women’s Health Advocacy Tool 11 the medicine man, Siya’ka to reveal an important vision for posterity, which resulted in Siya’ka’s loss of life and a loss for his community as his cultural knowledge passed with him (Strega and Brown, 2015, p. 246). There were several incidents within this re-search process where I knew that the sacred dreams shared with me and the cultural knowledge gifted to me were not to be written of in this research because it held the potential to harm the storytellers or their communities. My model for Indigenous research is taken from Smith’s, Decolonizing Methodologies (1999) Figure 6.1 The Indigenous Research Agenda (p. 121). It shows self-determination at the center of research with the four directions – decolonization, healing, transformation and mobilization – guiding the process (p.121). Smith (1999) stated, “The chart uses the metaphor of the ocean tides. The tides represent movement, change, process, life, inward and outward flows of ideas, reflections and actions. They are not goals or ends in themselves. They are processes that can be incorporated into practices and methodologies. The agenda is focused strategically on the goal of self-determination of Indigenous peoples (p. 120). The following four quotes from the storytelling interviews highlighted their experiences with the four directions and the process of self-determination: 1) Healing: “And then the more I talked … the more I became stronger and I think that’s what helped heal me is when I spoke about it … to the audience. So it really helped. That was something I had to try and seek or find within myself just so that I can help myself and then help my family. Talking about it was really an icebreaking thing for me.” 2) Decolonization: “And then at the end of the project I showed my grandmother and she was so proud, and tears in her eyes, and I was like, “Wow.” So I was actually grateful at the end of the video to be apart of it. My grandma, she said that because I was young and to practice the culture and, you know, taking DST Women’s Health Advocacy Tool 12 part in it, like just participating in it.” 3) Transformation: “I kind of like the recording part … And I also like finding the music for the background. I enjoyed that and I felt proud that I made choices in creating the digital story with Shelley’s help, so I felt like I can do anything.” 4) Mobilization: “I guess the most powerful moment was after we shared our stories and people came up and really thanked us for what we did. Then, also just being able to have interviews and be able to give a little bit of the background of it. Like it wasn't just put out there and actually being able to give a background on why we did the stories.” 1.4 Story as Indigenous Methodology Storytelling – a form of knowledge exchange – plays a vital role in Indigenous communities (Wilson, 2008; Smith, 1999; Kovach, 2009; Regan, 2010). Kovach (2009) stated storytelling has been a pedagogical practice for tribal societies since time immemorial as, “vessels for passing along teachings, medicines, and practices that can assist members of the collective. They promote social cohesion by entertaining and fostering good feeling” (p. 95). Storytelling “evokes the holistic quality of Indigenous methodologies” and there exists interrelatedness between storying and knowing (Kovach, 2009, p. 95). There are two forms of storytelling within Indigenous epistemologies including “creation and teaching stories” and “personal narratives of place, happenings, and experiences…passed down generation through oral tradition” (p. 95). Storytelling is practiced within research methodologies that value “contextualized knowledge” centering the storyteller as the authority on their own personal life experiences6 and making space for Indigenous peoples strength-based stories of resistance and survivance (Kovach, 2009; Smith, 1999; Vizenor, 2008). Kovach (2009) stated that within storytelling the researcher holds a responsibility to maintain the integrity of the storytellers’ 6 Storytelling in the form of personal narratives may change depending on what the storyteller wants to emphasize in the story and depending on the circumstances (Thomas as cited in Strega and Brown, 2015, p. 178). DST Women’s Health Advocacy Tool 13 voice and representations; moreover, the identity of the researcher is important to the interpretation of the story and co-creation of the research (pp. 99-100). I discuss aspects of my re-searcher identity and co-creation with storytellers7 and my own self-reflectivity later in this paper. Indigenous educator Jo-ann Archibald’s coined the term “Indigenous storywork” – a process that asks the audience “to think deeply and to reflect upon our actions and reactions” (Kovach, 2009, p. 94). Archibald’s list of principals and protocols that are integral to Indigenous storytelling as pedagogical practice include: “respect, responsibility, reciprocity, reverence, holism, interrelatedness and synergy” (Regan, 2010, p. 190). Storytelling is important in Indigenous culture because it is how we “teach the young and remind the old what appropriate and inappropriate behaviour consists of in our culture; they also provide a sense of identity and belonging, situating community members within their lineage and establishing their relationship to the natural world (Thomas as cited in Strega and Brown, 2015, p. 178). Regan (2010) stated, “Storytellers share their own life experiences with humility as a way of provoking critical reflection in others, while continuing to learn themselves. Decolonizing stories told in this manner are an interactive exchange between teller and listener in which both learn and teach” (Regan, 2010, p. 32). It is essential to the decolonization process that “Indigenous people speak with our own voices about our histories, culture, and experiences as we continue to resist the onslaught of colonial structures, policies and practices” (Regan, 2010, p. 33). Indigenous peoples are constantly struggling to find spaces to practice decolonization and center their voices in the reconciliation process, especially for Indigenous women. The digital stories and the Indigenous 7 Chapter 6: Storytellers Feedback on the Digital Storyteller Researcher DST Women’s Health Advocacy Tool 14 knowledge translation events created a safe space for Indigenous women to share their health stories in a culturally appropriate way with the reciprocity of being both educator and learner. Archibald also shares insights on the role of a “responsible listener” in the context of Indigenous storytelling (Regan, 2010, p. 191). A responsible listener means the following as described by Regan (2010): The first step in truly listening is silence, not just refraining from speaking, but being silence. Being silence is not an action or inaction; it is a state that engages our bodies, minds, feelings, and spirits. When we are being silence, we are concentrating, still and calm. Our thoughts are silent. Our attention is in the present…When we are willing to enter a space of listening…we will hear, know and sense things both spoken and unspoken …we don’t know how this happens, but we know that it does happen. It is as though the stories that are shared are doorways into many other stories…once we enter that world with another…this can lead to many things. One of them is change (p. 192). Furthermore, responsible listening on the part of the audience members, “requires a double attentiveness, a listening to the testimony of the one who is speaking and, and at the same time, a listening to the questions we find ourselves asking when faced by this testimony…We must pose questions to ourselves about our questions” (Regan, 2010, p. 191). This type of listening allows for self-reflexivity, which is an absolute requirement for reconciliation. As Indigenous scholar Val Napoleon states, “many cross cultural sensitivity training programs are designed solely to educate settlers about Indigenous people without any reciprocal sharing by the former about their own history, cultural practices, world views and values. Consequently, settlers have their awareness increased, but not about themselves. Instead it is a one-way street, another example of the ‘Aboriginal people under the looking glass’ phenomenon” (Regan, 2010, pp. 3334). Thus, audience members, especially of settler descent must practice critical self-reflection as part of the reconciliation and decolonization process (Regan, 2010, p. 34). The intention of the screening the digital stories with health care professionals was to engage them in deep listening DST Women’s Health Advocacy Tool 15 and self-reflection on their own clinical practices, thereby increasing cultural safety in health care settings. 2. Literature Review 2.1 The Methodology of Indigenous Digital Storytelling Indigenous digital storytelling incorporates the cultural tradition of oral storytelling and is considered “decolonizing research” (Smith, 1999) because it attempts to destabilize power dynamics and colonization by taking its cue from Indigenous scholars practicing methodologies such as “narrative research” (Hendry as cited in Cunsolo-Willox et. al, 2012, p. 129). Indigenous digital storytelling (DST) as an Indigenous research method (IRM) is respectful of Indigenous culture and community because it is a “culturally appropriate way of representing the ‘diversities of truth’ within which the story teller rather than researcher retains control” (Bishop as cited in Smith, 1999, p. 146). It allows for communities to control their own narratives, and histories, and helps to build multigenerational relationships in Indigenous communities (Iseke & Moore, 2011, p. 34). Furthermore, Iseke & Moore (2011) highlighted the two-fold purpose behind Indigenous DST: the process of learning filmmaking skills and educating the storytellers on traditional knowledge, thereby affirming their cultural connections and legitimizing Indigenous worldviews (p. 26). Indigenous DST is a strength-based approach because it is co-created knowledge directly from the voices of the participants with their own worldviews and cultural teachings that can be delivered quickly to the community and engage all literacy levels (Cooper & Driedger, 2018, p. 62). Like my own research, Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories DST was identified as a healing process for participants, a powerful tool for marginalized voices, and holds the ability to DST Women’s Health Advocacy Tool 16 build community relationships between the storytellers and the audience (Briant et al., 2016; Cueva et al., 2016; Fontaine et al., 2019). Digital storytelling is a culturally appropriate way to disseminate health promotions and prevention knowledge to because the storytellers incorporated “two-eyed seeing” with both a biomedical perspective and a spiritual and cultural understanding of their health (Cooper & Driedger, 2018; Jull et al., 2018; Fontaine et al., 2019). It also allowed the participants and audience to understand that Indigenous traditional knowledge deserves space in health research and should not be place in dichotomy from biomedical Western understanding, nor should it be viewed as less than Western knowledge (Fontaine et al., 2019, p. 8). This aligns with my belief that Indigenous community members are “situated bodies of knowledge” that are experts in their owned lived experiences and have the solutions to their issues (Wiebe, 2019, p. 30). The storytellers are capable of advocating for their own health service needs because of their lived experience as users of the healthcare system, and allowing them to speak truth to power – the healthcare professionals in charge of policy – is the best way to affect change within that system. Similar to Fontaine et al. (2019) storyteller interviews and coding I analyzed the transcripts with other researchers, and I asked for feedback on the themes of the coded data from the storytellers in order to clarify any cultural knowledge or concepts I may have missed. This decolonized approach to data analysis involved co-creation of interpretations and themes on behalf researchers and the storytellers (Fontaine, 2019). 2.2 Indigenous Knowledge Translation Indigenous knowledge translation is “by and with” Indigenous peoples and is defined by Smylie et al. (2014) as “sharing what we know about living a good life” (Jull et al., 2018, p. 7). Cooper & Driedger (2018) recognize the gap in evaluation opportunities for knowledge DST Women’s Health Advocacy Tool 17 translation (KT) products (p. 64) and Jull et al. (2018) state there is a gap in published literature on how to practice Indigenous KT (iKT) (p. 7). There is a need for iKT processes using strengthbased approaches because of the history of colonial practices, policies, and research that have resulted in deficit based narrative and stereotypes of Indigenous peoples (Cooper & Driedger, 2018, p. 62). In the past, the narrative surrounding Indigenous peoples health has been from a deficit lens that has encouraged harmful discourses of pathology and stigma surrounding indigenous peoples (Hyett, 2019). Hyett et al.’s (2019) defined a deficit discourse as, “a mode of thinking that frames and represent Aboriginal identity in a narrative of negativity, deficiency and disempowerment” (p. 103). These stereotypes of deficiency such as ‘drunken Indian’ have exacerbated, rather than addressed, persistent health disparities and continue to harm Indigenous peoples (Hyett, 2019; Sylvestre, et al., 2018). Furthermore, Cooper & Driedger (2018) make the distinction that the construction of Indigenous knowledge often differs from knowledge within Western institutions, meaning that iKT dissemination products must also fit within Indigenous ways of knowing, and be guided by Indigenous knowledge keepers and knowledge users (p. 64). The purpose of iKT is as a democratic process between users and researchers to co-produce knowledge that can be put into practice with the goal of research outputs being relevant, useful, and applied to both practice and policy (Jull et al., 2018, p.3). Integrated KT is necessary in Indigenous health research because it carries the principals of respect, reciprocity and collaboration in community research, and therefore becomes inherently ethical and acceptable by Indigenous communities (Jull et al., 2018, p. 4). The strength of iKT is that the knowledge holders/community members are recognized as collaborators and co-present, which fosters more meaningful relationships that are DST Women’s Health Advocacy Tool 18 based on mutual respect and trust, and thereby more ethical and relevant research (Jull et al., 2018, p. 6). The purpose of this research is to fill iKT gaps by evaluating the participants experience at our Legacy event in Yellowknife, Northwest Territories. This research fills a gap in how to safely and ethically conduct Indigenous knowledge translation (iKT) with Indigenous women. It also features the storyteller’s self-directed iKT and implementation and how they enacted learning opportunities for their communities. This research is unique in that my digital storytelling co-creators told me, the researcher, where they wanted their stories featured in the media such as CBC North, APTN, Eagle Feather News and the academic conferences they were willing to feature our research – the Alberta SPOR Summer Institute. Furthermore, whenever I present our DST research I ask them if they would like to attend and I offer their names as speakers for media requests8. This research also allows Indigenous women to share their insights on how health care providers may implement culturally safe care for Indigenous people in both practice and policy. 2.3 Cultural Safety in Health Care Building respectful relationships with Indigenous patients requires medical professional to receive education on cultural competency9, relevancy10, and humility11 - all of which contribute to health care professionals ability to provide culturally safe care (Bourassa et al., 2020, p. 5). Bourassa et al. (2020) stated “a person is considered to encompass culturally safe 8 August I was interviewed for the Sickboy Podcast about our Indigenous women’s health stories and I referred storyteller Tanya Roach as a follow-up guest on Inuit women’s health. https://www.cbc.ca/listen/cbc-podcasts/434-sickboy/episode/15793036women-warriors-advocating-for-indigenous-womens-health. 9 Defined as a process of individuals gaining information, skills, and respect for cultures with the intention of effectively working with individuals of that culture (Brooks-Cleator et al., 2018, p. 203). 10 Defined as determining if programs and services aptly include relevant aspects of values, traditions, beliefs, and practices (Bourassa et al., 2020, p. 5). 11 Defined in relation to safety involves internal self-reflection of personal bias while being able to humble yourself immersing or understanding the cultures of other people (Bourassa et al., 2020, p. 5). DST Women’s Health Advocacy Tool 19 practices if they are able to maintain a trusting and reciprocal working relationship with someone from another culture” (p. 4). Cultural safety (CS) is centered on “acknowledging and respecting patients’ attributes, such as their everyday activities, personal values, and life experiences, and on understanding the impact of the health-care providers’ culture on interactions with patients and his/her associated privilege as a health-care provider” (Brooks-Cleator, Phillipps & Giles, 2018, pp. 203-204). Moreover, the patients receiving care hold “the ability to define an interaction as culturally safe” and this definition can extend beyond the “individual providerpatient interactions” to examine systemic issues (Brooks-Cleator et al., 2018, p. 203). CS is a framework used to examine “relationships of power within organizational, structural and institutional conditions” which includes “colonial-based racism that is ingrained in the medical field” (Brooks-Cleator et al., 2018, p. 203; Bourassa et al.’s, 2020, p.5). Cultural safety is applied “through recognition of biases and critical self-reflection [that] diminishes the risk of unsafe care that result from cognitive errors or stereotypes” (Brooks-Cleator et al., 2018, p. 204). There exists a need for culturally safe and appropriate evidence and practices in health care systems that are relevant and applicable by systems users, such as Indigenous peoples, and by those who deliver health services (Jull et al., 2018, p.2). The literature on cultural safety training in Canada shows a focus on theory and training with unclear definitions of the actual concept of CS and limited discussion on its implementation (Brooks-Cleator et al., 2018, p. 204). As well, the literature identifies how certain course designs may be “detrimental to cultural competency by providing only superficial knowledge or by contributing to the beliefs that Indigenous cultural competency training is a niche or irrelevant issue” (Berg et al., 2019, p. 128). Brooks-Cleator et al. (2018) identify six elements of culturally safe initiatives: “collaboration/partnership, power sharing, address the broader context of the patient’s life, safe DST Women’s Health Advocacy Tool 20 environment, organizational and individual level self-reflection, and training for health care professionals” (p. 209). This digital storytelling research is directed at individual self-reflection on behalf of health care professionals that view the digital stories and as a form of cultural safety training through a decolonized and strength-based lens approach to Indigenous health. The selfreflection of personal biases and examining of personal “attitudes, understandings and actions about Aboriginal people” is measured through the Audience Questionnaire on Indigenous Women’s Health Stories (Appendix I) (Brooks-Cleator et al., 2018, p. 210). Digital storytelling as a form of cultural safety training is culturally relevant for Indigenous peoples because the methodology of storytelling aligns with oral traditions (Smith, 1999; Kovach, 2009). The most important aspect of this research has been the formation of empathetic connections between health care providers and Indigenous women’s stories of cultural genocide such as the forced removal of Indigenous children to residential schools, and how it manifested in Indigenous peoples’ physical, spiritual, mental and emotional health. Berg et al., (2019) stated, “post colonialism as a theoretical approach enables healthcare providers to better understand the ongoing role of colonialism in producing health inequities” (p. 128). Indigenous women’s health stories are post-colonial accounts, and therefore, function as a form of reconciliation in healthcare. These stories assist medical professionals in understanding their own positionalities and reflect on the ways they may disrupt the systemic racism embedded in our institutions (Brooks-Cleator et al., 2018; Berg et al., 2019). 3. Research Findings on the Digital Storytelling Process 3.1 Methods & Analysis The central aim of this study was to honour the oral traditions of Indigenous storytelling and elevate Indigenous women’s traditional knowledge and their views on holistic health. The DST Women’s Health Advocacy Tool 21 storyteller interviews were conducted eight months after the iKT event, Legacy with the goal of discerning more about the digital storytelling research process and self-reflections from the storytellers. During the month of May 2020 my research assistant12 conducted the five interviews with the storytellers over the phone and received their consent to record their conversations for transcription (see Appendix F). During the months of June and July I co-coded the transcripts with two academics13. The five digital storytellers each compensated $100 for their time and they were asked if they wanted to review the transcripts before the coding began. Four of the five digital storytellers requested to review the transcripts and edited the interviews for clarification or redacted what they did not want included. During the month of August I offered the opportunity for the five storytellers to review the coded themes and one storyteller volunteered to provide feedback. The co-construction of knowledge with the storytellers maintains the holistic qualities of the research data and allowed for clarification on cultural concepts and experiences rooted in their perspective of First Nations, Métis or Inuit ways-of-knowing (Smith, 1999; Wilson, 2008; Kovach, 2009). Foundational to the analysis of this data is Kovach’s (2009) concept of relationality between the researcher and the storyteller, which I go in depth in Chapter 4: Our Medicine Bundle Is Our Own Life. 3.2 Results The Digital Storytelling Process The storytellers identified six important aspects of the digital storytelling process. I will share the results of each overarching theme and subthemes in chart form and expand the concepts with quotes from the transcripts in the discussion section. The coded data from the transcripts (see Appendix A-E) is also available in a mind map online14. 12 Lily is of settler descent and a Research Associate at the Cumming School of Medicine. Lily is of settler descent and a Research Associate at the Cumming School of Medicine. Dr. Leason identifies as SaulteauxMétis Anishinaabek Kwe. 14 https://mm.tt/1590851648?t=1wGYToyIQa. 13 DST Women’s Health Advocacy Tool 22 Table 2: Digital Storytelling – The Digital Storytelling Process Themes (see Appendix A-E). Category Theme Subtheme 1. Storytellers motivation to participate and share stories 2. Storytellers emotional journeys - Sharing strength based stories - A form of advocacy for Indigenous women - Praxis: sharing personal stories of colonization as the overarching SDofH15. - Stories universal and beneficial to everyone (not just a specific group). - Creating opportunities for communication between health care professionals and FNMI peoples. - Fear of judgment - Sharing story to heal self 15 - To benefit and encourage other Indigenous peoples - As examples of resiliency - Sharing strength based stories with health care professionals to educate and advocate for FNMI health. - Fear of exposing past traumas and painful experiences. - Fear of stereotypes and misconceptions. - Overcoming fear of judgment through telling their authentic story. - Challenging stereotypes and misconceptions - Self determination: courage comes from women speaking on their own terms Czyzewski (2011) states colonialism, a distal determinant of Indigenous health continues to shape “Indigenous/state/nonIndigenous relations and account for the public erasure of political and economic marginalization, and racism today” (p. 4). DST Women’s Health Advocacy Tool - Digital storytelling process required vulnerability and selfreflection - Lack of confidence and selfdoubt - Privacy concerns & protecting privacy - Emotional risks presenting stories in media & in public iKT event 3. Storytellers self-identified outcomes - A healing journey 23 - Taking about their trauma and hidden past - Self-help through the DST self-reflexive process - Self acceptance - Personal transformation (growth + development) - Building familial relationships - Truth and reconciliation - DST as a tool of advocacy/praxis - A constructive way to challenge systems of oppression - A way of sharing alternate systems or how Indigenous women could make changes - DST a genuine reflection of self 4. Building storytellers capacity through concrete and transferable skills - Learning the “How-to” skills of DST - Storytellers had control - Happy with the finished product - DST a satisfying and fun process - Interview skills - Interpersonal communication skills - How to write + edit a story -Digital literacy (iMovie) DST Women’s Health Advocacy Tool 24 - Recording vocals on a professional microphone - Media skills - How to be interviewed + stay on topic - Overall increased self-confidence 5. The value of storytelling as - An immersive experience as a methodology opposed to reading it in a book (audio+visual) - Healing through empathetic connection between audience/storyteller - Reflects the cultural aspect of traditional oral storytelling - Traditional storytelling combined with technology for a contemporary format 6. The researcher/storyteller - Home interview environment - Holistic understanding environment important because it provided… of the storyteller - Good for relationship building between researcher/storyteller (comfort+trust) - Connection to the storytellers land an immersive experience to share stories - Provides epistemological understanding of storyteller through sharing their connection to land - Safe place to start the DST journey +gain confidence for more unfamiliar aspects of DST research (i.e.) stepping stone on the healing path 3.3 Discussion on the Digital Storytelling Process The storytellers were motivated to share their personal health stories because they viewed it as an opportunity for truth telling and sharing the impacts of colonization on their health. Their DST Women’s Health Advocacy Tool 25 motivation also stemmed from wanting to advocate for Indigenous women and inform the public about why Indigenous peoples experience disproportionate rates of chronic illness and higher rates of violence such as MMIWG2S+. Their stories functioned to transform deficit-based narrative surrounding indigenous people's dysfunction and the reasons behind Indigenous peoples’ stories of high-risk lifestyles as a result of Indigenous peoples traumas such as residential school attendance. Their stories framed colonization as an external force as opposed to internalized dysfunction and allowed Indigenous women to share strength-based stories and showcase their resiliency. So, I feel as an aboriginal woman, not too many of our aboriginal women have the opportunity to voice exactly how it is to be an aboriginal woman. Like the missing and murdered aboriginal women that are out there, that had kind of similar experiences, had those traumas, had those things in their lives. And that’s why they're there. That’s why that took them – Oh, she’s just a drunken woman, but why is she a drunken woman? So a lot of people think, oh, well, she was just another drunken woman and she was murdered, because she was out there, because she was drinking. And, yeah, that is part of the story, but there’s another part of the story that there’s a reason why she was out there drinking and putting herself at high risk. You know, because of traumas she might’ve had. So, my vulnerability was to put it out there that I felt maybe it would touch other women that, yes, we've been through this, but we can get through it. A resiliency in the midst of that. One woman was motivated to participate in the digital storytelling process as a way of healing herself and helping people understand Indigenous women’s lives by sharing her story. It would be like a healing … kind of like a healing journey for myself … and I thought, okay well, you know, tell my story just so that everybody will know what goes on in our lives, what us First Nations women have to go through. The digital storytelling facilitator’s Métis heritage was important for one participant’s motivation to partake in the research project. She suggested that Shelley’s insider perspective was important in advocating for Indigenous women’s health. She trusted Shelley to be motivated to share the stories as a learning tool and advocate for First Nations, Métis and Inuit health improvements. DST Women’s Health Advocacy Tool 26 I'm grateful that Shelly is undertaking this project and inserting the knowledge and her experience into the work health environment. So I appreciate the fact that this is her. It motivates her to bring these stories to other people and say, "Hey, you need to listen to this and you need to learn." And so the process, it was good and the fact that she continues to advocate these stories and these experiences and then creating more communication between health care professionals and First Nations, Métis and Inuit is very good, yeah. One storyteller struggled with self-doubt when asked to co-create a digital story she stated, “What would be my story line, what would I have to talk about? How would I have to contribute to women’s health?” She questioned her ability to make any meaningful contribution to a health story, which I feel underlines Indigenous women’s lack of confidence due to internalized oppression and historical trauma – feelings of being ashamed of Indigenous identity - and not being encouraged to vocalize or share stories of Indigenous peoples oppression. Another storyteller was surprised by the amount of self-reflection required by the digital storytelling process. She stated, “So last summer when Shelley asked if I would do this I was like, "Oh, yeah, sure, sounds like fun." But then when I got home and actually like sat down and looked at this project it was a lot deeper and heavier than I thought it was going to be.” I suggest that the digital storytelling process was heavy because it required an inventory of their past and how their mind, body, spirit, and emotions are connected to intersectional oppression (sexism/racism/colonialism) and the long-term health implications due to internalized oppression. The storytellers shared they would like more public opportunities for Indigenous peoples to share their health journeys and let other Indigenous peoples know they are not alone in their “survivance16” within colonial systems (Vizenor, 2008). Well definitely First Nations communities; with those stories, I think it would be relative to them because it would open their eyes as to who they are as people. You know they’re not the only ones that are struggling with these different stories – this is the variety of stories that every Indigenous person is struggling with. And there’s just no platform to put it out there, to let them see that this is what’s really going on. These are 16 Defined as Indigenous self-expression in any medium that tells a story about our active presence in the world now. DST Women’s Health Advocacy Tool 27 the ways that you can get help. You know this is not OK. And just to let them know that they’re not alone. The storytellers identified the digital storytelling journey as emotionally challenging with their emotional states described as vulnerable, uncomfortable, scarred, and just emotional. Several women expressed fear of exposing their truth and being judged as dysfunctional by their community and peers. And then we also did like a radio clip for CBC North. It put me in a very uncomfortable state and just very – it made me very vulnerable and scared and just emotional. And knowing that people were going to hear my story, and not see that picture-perfect outline that they see walking down the street that has it all together. Because that’s who they see and they make up these things – stories about what they see, and they think that that’s true. But when you get past that, that’s not who I am, and people don’t really know who I am. And so actually telling a story of suffering from depression, it puts it out there that their predictions weren’t true and like they really see the real me. They really see the vulnerability that I put out there for them to know me. And so it was scary and uncomfortable. One woman described how she overcame her fear of judgment by telling her authentic story in her own words and demonstrated that women draw courage from speaking on their own terms. I was kind of like, oh, what do you call that, stage fright at first, but then I had to overcome that, because I needed to tell them my story, so that’s, I had the courage to tell my story in a way that I felt comfortable in saying it … Yeah, without, you know, but I kind of knew what to say, but then it was kind of like in my own words … It’s like the authentic story. Furthermore, several storytellers’ shared that talking about and openly sharing their truths lead to their own healing, which I suggest is the truth telling portion of the reconciliation process. And then the more I talked … the more I became stronger and it just, I think that’s what helped heal me, is when I spoke about it … to the audience, so it really, it really helped … I don’t know if, you know, even if I went to counselling, I don’t know, maybe that could’ve helped too, but you know, that was something I had to try and seek or find within myself just so that I can help myself and then help my family. So, I don’t know if counselling would’ve really helped, I have no idea, but you know, talking about it was really an icebreaking thing for me. DST Women’s Health Advocacy Tool 28 A storyteller identified her outcomes from the digital storytelling process as more selfacceptance, reaffirmation of cultural heritage and identity, healing intergenerational trauma, and cultural reclaiming and resurgence. It was bittersweet, you know, because a couple of years ago I would have rejected speaking about my namesake and my family and being open about that. Because I didn't have that knowledge and the acceptance of myself. So it looked, when I watched it felt like a milestone in my personal journey which I'm very grateful for because I have a son. And so if I reject myself and my culture he's going to do the same thing as a child. So by accepting more of myself my child is going to learn to accept himself more. And it also reaffirmed my roots because a lot of my family still don't accept me for being half white. It, I was reclaiming something that is biologically and genetically me and mine, even if my family back home don't fully accept me. The storytellers also identified that the methodology of digital storytelling reflects traditional and cultural values of oral storytelling throughout generations but combined with technology made it a contemporary format. Well, I like it because somebody wants to start [learning] my story, and my stories that I have I treasure them because it’s my grandpa, my grandfather’s, it’s like, you know, it’s my family history, what I’ve done, we, like my family, what they’ve been doing for years. Like generation after generation, right? And for someone that wants to know, wow! I’m like yeah! You want to know my story, I can tell you my story. I was kind of excited. I was honoured, and when we actually put it together I was even more impressed, I was like, “Oh my God, technology these days, wow!” I thought. Shelley visited the storytellers in their home environment before and during the digital storytelling process which was important to the process for several reasons including: a more personable and holistic understanding of storyteller; relationship building between facilitator and storyteller; connection to the land an immersive experience for storytelling; a safe place to start the DST journey and gain confidence for more unfamiliar territory; and, incremental steps in their healing journey. You know, it’s kind of like if you’re in an office setting and you’re trying to explain the area, but then, you know, they don’t really get the understanding, like let’s say, when Shelley came over, she understood the stories I told her, she understood. And you know, nothing would’ve came up if she didn’t come over and I didn’t give her a DST Women’s Health Advocacy Tool 29 tour and nothing, I wouldn’t have remembered anything if I was like in an office somewhere … You know, that wouldn’t have, any of that, whatever I told her wouldn’t have came up … yeah. So, it’s kind of like where … we kind of have a, it’d be like a connection with the land and the area where we can be more, where we experience it more and … then we feel comfortable. It’s kind of like a stepping stone and then when we’re away from our, you know, area, then we’re off like what we did when we went to Yellowknife, then it was more, it was easier to talk about it then, because we kind of went through this little stepping stone and we started from, you know, where it all happened, right. So, the experience is … yeah, I didn’t even think about that until I mentioned to you, it’s like a stepping stone on the healing path. The ability of the storytellers to connect the stories to their land base also gave the facilitator a better understanding of the storytellers’ epistemology. Due to the storyteller’s different cultural origins and land bases this type of exploration of their epistemologies was important to co-creating their health stories. Finally, the concrete skilled learned by the storytellers – also known in Indigenous research as capacity building within Indigenous communities – was identified by the storytellers as the following: learned interview skills; development of interpersonal communication skills; learned how to co-create a story; learned computer skills/editing software; learned how to write and edit a story; and, learned voice recording skills. One storyteller stated an overall increase in self-confidence because of the DST process. I kind of like the, you know, recording part, I don’t know how to work it, but I kind of like that recording part … And I also like the, you know, finding the music for the background; that one I enjoyed. So, it was really, you know … I enjoyed that and I felt proud that I, you know, I made choices in creating the digital story with Shelley’s help, so it really, I felt like I can do anything. It was the role of the DST facilitator to offer encouragement and positive reinforcement of the storytellers’ choices, thereby increasing confidence in their ability to make decisions. By framing the storytelling process as their own art - an authentic representation and story of their personal lives - it helped the storytellers build their confidence because there were no right or DST Women’s Health Advocacy Tool 30 wrong choices. In addition, the facilitator presented the project as culturally relevant art, which served to encourage storytellers to participate in the first place. You know, a part of doing this project is being open to personal growth, development and challenge. You know, had I known at the beginning if like there was a sentence that says, ""Are you ready for personal challenge, growth and acceptance?"" you know, I might have been like, ""Oh you know not really right now I’m not really in that place."Although I'm the kind of person that shouldn’t know that beforehand otherwise I'll say no and then not do it, but if I put myself in it I know that I have to finish it. But what Shelly did like and how she explained the project was all that I needed. And I feel like using that same approach in the future with other women is just do what she's doing still. I would suggest for future reiterations of Indigenous digital storytelling workshops with Indigenous communities to emphasize that there is no right or wrong way to tell their personal story and that spirit will guide them on this journey. 3.4 Results on Indigenous Knowledge Translation Table 3: Digital Storytelling – Indigenous Knowledge Translation Themes (see Appendix A-E). Category Theme Subtheme 1. Group dynamics - The importance of group support - Witnessed each other’s vulnerabilities - Genuine sharing of stories - Group safety (felt safe to share because others were sharing) 2. Event setup - Created safety through participant control - They chose their own questions for the panel Q & A - Group preparation for panel Q & A (preparing answers ahead of time allowed allowed them to control their emotions). - Reassurance from the facilitator that the participants had control over their environment DST Women’s Health Advocacy Tool 31 - Created a safe space for Indigenous women to be vulnerable - It felt like a graduation ceremony to the storytellers 3. The storytellers preparation for sharing 4. The role of the audience - Did mental preparation to share story - Appreciation + gratitude from audience members for storytellers sharing their stories - Validation of their efforts for doing their DST - Graduation from healing - Expert in telling their own story - Helped to have facilitator’s support - Showing authentic selves and having the audience members accept them - A beautiful experience for storytellers to have their stories appreciated - Empowerment for storytellers to share their stories with audience - Occupying colonial spaces + minds - Dispelling misconceptions+challenging stereotypes + stigma of Indigenous women - Addressing hidden racism - Advocacy tool for Indigenous women - Communicating strength based stories (trauma+reslience) with coworkers - DST as an education tool on the legacy of IRS + reconciliation - Strength based storytelling from Indigenous perspective - Showcasing pride in culture and cultural continuity - Generational shifts - the audience witnesses Indigenous women proud of their culture DST Women’s Health Advocacy Tool 5. Storytellers self directed knowledge translation & implementation - Validation from audience members that their story was important - DST as a tool of community healing 32 - Orange shirt day public schools to teach younger generations about the legacy of IRS and reconciliation - A free resource from the perspective of the Indigenous community member - A tribute to FN/Metis/Inuit residential school survivors - Opening familial space for IRS survivors + their family members - DST as a tool of intergenerational family healing - Halo effect (one person heals their trauma and shares their resources +teachings with other family members) - DST as a tool of education on the legacy of IRS and intergenerational healing - Personalized education for specific communities (not a panIndigenous experience of IRS) - A tool to teach fellow employees about IRS+ reconciliation - ally ship in the work place - DST as decolonization - Strength based narrative featuring cultural pride, cultural continuity + cultural revitalization - Generational shifts of Indigenous women proud of their culture, teachings, DST Women’s Health Advocacy Tool 33 resiliency + revitalization of culture 3.5 Discussion on Indigenous Knowledge Translation Several storytellers stated there was mental preparation involved before sharing their stories at the Indigenous knowledge translation (iKT) event, Legacy. A key aspect to mental preparation was the facilitator informing the storytellers about the details of the iKT including where it would take, who the audience members would be, how it would be set up and the storytellers’ roles and their expectations, which functioned to help them feel secure: And she was very upfront about everything that she was going to do with the story. There were no surprises and we knew what it was for and we had a focus. So, that helped a lot and that your story wasn't just going to be thrown out there to whomever. And it was up to us if we wanted to share, but for Shelley, she was very upfront who she was going to share with and the audience she was going to share it with. So, that helped a lot. The digital storytelling facilitator offered unconditional support and a variety of options to make the storytellers feel safe such as leaving the stage if they felt the need. A storyteller stated she felt supported in her choices: I just told her beforehand if we’re not comfortable to answer questions, can I, you know, get off the stage or something? And she said, “Yeah.” So I was actually totally – How would I say? It was us that chose to follow through and she supported us, so if we do want to either way it was still good, just having the support there, right, was good. The group dynamic offered the storytellers security because they collectively shared their vulnerabilities and supported each other on this journey. A storyteller stated being in a group encouraged her. Well, I wasn’t the only one, so there is other ladies that were in the group that did their stories, so that made it more comfortable, like that made it more supportive with other ladies around … Yeah, but if it was just myself then I don’t know that, that’s another challenge. DST Women’s Health Advocacy Tool 34 An important aspect of the event set-up was collectively brainstorming and discussing the three panel questions before the live event. Several of the ladies stated having control of the panel questions and preparing their answers created a safe space for them to be vulnerable: She said we’re all going to do the questioning and it’s not going to like open discussion for everybody. So, that was good. Where we created the questions that we were willing to answer, so that was good. Yes, because you kind of know what questions, so you have a little bit of a time to prepare yourself to be able to answer the questions, instead of being put out there where there could've been different questions out there. But at least you're more prepared. And it was very highly emotional too, definitely, to share the story. The audience members played a significant role in the storytellers experience because the storytellers received validation and appreciation for their stories. It was also a way for storytellers to express their authentic selves and to dispel misconceptions, stereotypes, and/or stigmas surrounding Indigenous women. One storyteller stated digital storytelling was an indirect and safe way of communicating her past personal traumas to her co-workers. Her digital story served as an educational tool on the legacy of IRS and reconciliation for her co-workers that worked with Indigenous families in their daily work environment. It was very emotional for me to share with my co-workers, because these are the people that I see every day. And I'm not the kind of person that shows a lot of emotion. Once in a while I do, but I'm not – I'm a very quiet person. Call me like an introvert or whatever. So, for them to see that part of me and see my history, that I was an alcoholic woman, I went through lots of trauma in my life and experienced a lot of things in my life that were traumatic and to be working there, you know, to be able to go and to be able to work with [Indigenous] families. A storyteller stated she felt appreciated and accepted by community members that she felt had preconceived notions of who she was. There was a few people that came up and they just said that – they just said thank you for showing that, and thank you for being strong for showing your story. Because they too they were surprised, and that goes back to what I was talking about; you know they saw me and they had this picture of me but it wasn’t me. DST Women’s Health Advocacy Tool 35 There was a feeling of empowerment by the storytellers that identified their own health care providers in the audience because the storytellers were inserting themselves into colonial spaces and occupying the minds of the colonizer. The iKT event with community members including health care professionals allowed them to address the power differentials between doctor and patient and communicate their health needs in a respectful way. I was nervous, I was … the relationship that I have with my doctor is rocky because I have to fight for a lot of things that other people don't have to fight for. And so when she was in the audience in the workshop and me speaking about this knowledge translation and the difficulties that I face with my health care professionals was really, it was, like I was nervous but at the same time it was empowering because she had to sit there and listen to what I had to say. Knowing that I have a platform to call out the things that she is not willing to do even though she has the power to do them. It pisses me off so much that she can sit there, tell me that she can't do these things when the next person in line who has her as a family doctor who I’m friends with is white, can get way more than I get makes my blood boil. I don't, it pisses me off. So having this platform and approaching it in a very honest but respectful way and then working towards actually finding like a resolution. One storyteller, whose digital story featured her grandparents (both residential school survivors) and the strong cultural practices they passed down to her, shared the importance of screening her story with her grandmother. And then at the end of the project I showed my grandmother and she was so proud, and tears in her eyes, and I was like, “Wow.” So I was actually grateful at the end of the video to be part of it. She said that because I was young and to practice the culture and, you know, taking part in it, like just participating in it. And because I was involved, even like when she does her traditional food I would just sit there and watch, you know, even though I didn’t have hands-on learning, but sitting there watching, like you learn from those. I suggest this cultural pride and sharing of asset-based stories is part of a generational shift from being ashamed of Indigenous identity as residential school survivors to being publically proud of cultural continuity and revitalization within familial lines. It also serves to encourage Indigenous communities to embrace their traditional knowledge and reclaim cultural practices, promote positive Indigenous identity, and acts as a form of self-determination. DST Women’s Health Advocacy Tool 36 One storyteller conducted a self-directed knowledge translation event in her home community showing her digital story about her family’s legacy of Indian Residential School at Orange Shirt Day17 on September 30th, 2019. I shared in Fishing Lake Métis Settlement, my home settlement and then Frog Lake First Nations, where my mom was registered and I'm registered there now too. So, I belong to Frog Lake First Nations. Yeah, so it was very powerful. Especially when I went to Frog Lake, because a lot of my relatives, my mom’s family, went to after the residential school my grandmother left Onion Lake Reserve and they all transferred to Frog Lake First Nations. So, it was very powerful taking it back to my home and my roots there in Frog Lake where a lot of people were – like her family was impacted by the residential school system. Like my uncles that lived in Frog Lake. She stated that doing her own knowledge translation in her community was more impactful for her personally than the iKT in Yellowknife. She used her digital story as an educational tool on the legacy of IRS and to commemorate her own community’s residential school survivors including her mother. I felt it was a greater impact when I took it to the school, because it was different. Because the young kids were being educated, like the younger generation was being educated about the residential school system and then actually being able – Like I shared some of the pictures of the sites, the residential school how it looked before, on that St Barnabas site and then how it looks now. So it kind of brought it to life to see this actually did happen and it was a difficult time in history for our people. I suggest that her knowledge translation event for her community could be part of a larger truth and reconciliation project. On reserve schools could host digital storytelling workshops for their students to explore their personal history of IRS and the intergenerational impacts it continues to have in their communities. 17 Orange shirt day is held on September 30th every year to commemorate the residential school experience, to witness and honour the healing journey of the survivors and their families, and to commit to the ongoing process of reconciliation. https://www.orangeshirtday.org/about-us.html. DST Women’s Health Advocacy Tool 37 4. Our Medicine Bundle Is Our Own Life 4.1 Self-reflectivity As a Métis womxn and re-searcher18 I will situate myself within this re-search, and share my self-reflectivity through Absolon’s (2011) statement, “Central tendencies of Indigenous research come from the self and from understanding the self in relation to the whole. In many cases, the Indigenous searchers utilized a self-referential and experiential approach to gathering knowledge. Our medicine bundle is our own life” (pp.68-69). It is my intention to demonstrate how this re-search project came to me through my relationships with Indigenous women in my community and how “self” was central to the search of my methodology. I begin my self-location through my place, family relationships, and my Métis identity. I explore my identity as an Indigenous adoptee that found my birth family at the age of 26 in my creative non-fiction piece, My Northern Healing that won first runner-up from this year's Sally Manning Award for Indigenous Creative Non-Fiction.19 The following excerpts from My Northern Healing shed light on my origins as an Indigenous adoptee and the evolution of my Métis identity upon reuniting with my birth father in Yellowknife, Northwest Territories. My adoptive parents are hardworking, god-fearing, conservative farmers that like to talk about the weather (the central topic of discussion in any farming community), their lawn (it takes eight hours to mow and looks like a golf course), their dog (taught him not to shit on the lawn), the news (their favorite anchor was Lloyd Robertson), and small-town gossip (people’s failing health, new babies, affairs, and renegade children). I am the middle of five children in my family with four of us adopted during the late-’70s to mid-’80s. My youngest sister and I are identified on our adoption papers as having Indigenous ancestry. I discovered I was Métis around age 11 when I accidentally-on-purpose found my adoption papers in my dad’s filing cabinet. It didn’t faze me since I had no idea what a “Métis” person was, plus I was a white-coded (fair-skinned with blue eyes) Métis being raised by settlers. Racist store clerks never followed me while I shopped. I was never bullied at school with racist taunts. 18 A term coined by Indigenous academic, Absolon (2011) to reflect the concept of research through as Indigenous paradigm of “rewriting” and “rerighting” our own stories and positions in history (p. 27). 19 https://uphere.ca/articles/my-northern-healing. DST Women’s Health Advocacy Tool 38 My paternal family has a 200-year-old relationship with the land originating with François Beaulieu II. The North taught me how to introduce myself in relationship with my family—the Mercredis and Beaulieus—and our connection to the land in the North Slave region. My grandmother is Anne Enge and my birth father is Bill Enge. He is a big man with a bigger personality. A breed that only the North could produce: Métis politician and champion of Métis rights, charismatic storyteller, crusader for social justice, astute businessman and a man who loves to tease, then indulge in a big, hearty laugh. Being Métis is not based on appearance, or having had mixed blood at some point in your genealogy. It’s based on an ancestral lineage and our historical occupation of the land. I have received a Grade-A education from my dad about the history of Métis peoples in Canada and the complexity of our identity. My vocabulary has expanded to include: Section 35 of the Constitution Act (1982), Powley tested Métis, consultation and accommodation, Aboriginal harvesting rights, agreement-in-principle, land-claim negotiations, tokenistic reconciliation, and the Métis heroine—in Bill’s view, at least—Jean Teillet. Learning about my Métis culture, family lineage, the history of the Northwest Territories, and living on my ancestral homeland has healed me. It gave me the courage to go to therapy to deal with my own childhood trauma (Wiart, 2020). As part of my healing process I started running and focusing on my holistic health. In 2015, I ran a half-marathon for Team Diabetes in support of my dad and his diagnosis of insulin dependent type II diabetes. That same year, after finishing my training and recognizing a gap in my community, Lloydminster, Alberta for Indigenous women to have a safe and supportive environment to exercise, I founded of an Indigenous focused health promotions program named Women Warriors20. My Eight Weeks to Healthy Living program provided free fitness classes and nutrition education to mainly Indigenous women. It also included a community building aspect with a culturally relevant sharing circle to encourage women to share their experiences with health and healing. The participants of the Women Warriors program (2015-2018) influenced my digital storytelling research project and two of the storytellers – Maxine and Beatrice – were former participants in the program. The participants shared their personal stories of racist experiences with healthcare providers in our round circle discussions and one-on-one with me. Also, they 20 https://www.womenwarriors.club. DST Women’s Health Advocacy Tool 39 expressed the desire to share positive stories (asset-based lens) of their community and culture because of the negative media and stereotypes of Indigenous peoples. Moreover, in my 4 years working with Indigenous women I witnessed how the health care system failed to create an environment of cultural safety and understand Indigenous women’s concepts of holistic health (mind, body, spirit and emotions) present in the Medicine Wheel teachings.21 I also had the inner knowing of the importance of land, language, culture and community in holistic health from my dad’s teachings over the years – we reunited in 2006 – and I understood decolonization as the return to our traditional language, kinship relations, knowledge, and teachings. My lived-experience with Women Warriors 2015-2019 in motivated me to become my own Indigenous health re-searcher, which is why I enrolled at Athabasca University in 2017 to complete the 16/40 courses I had left on my 4 year Bachelor of Arts. I wanted to ground the Women Warriors research in Indigenous ontology/epistemologies/methodology/axiology (Wilson, 2008, pp. 33-34). I was drawn to the methodology of Indigenous digital storytelling because I knew the power of storytelling in my own life with my father – it was how I reclaimed my Métis culture and identity – and, it was a wholistic methodology that would capture a much wider understanding of Indigenous women’s health than data collection based on body measurements. As well, I had strong relationships with the participants of Women Warriors that were based on respect and reciprocity. It was my intention to power share, co-create, and help them advocate for their own health needs. I learned many important lessons from my experience with Women Warriors including the importance of relational accountability to the participants of Women Warriors. It was through 21 The Women Warriors 8 Weeks to Healthy Living program is based on Cree Medicine Wheel teachings because it is located on Treaty 6 territory with most participants identifying as Cree. DST Women’s Health Advocacy Tool 40 my relationship with the participants and my accountability to the community that I learned how to conduct ethical Indigenous health research. I am cautious about partnering with researchers that do not hold relational accountability to the communities they are conducting research with. I believe colonial violence is perpetuated in academia when there is no relational accountability and because of colonial demands for research data, funding, and outputs like academic papers. Colonial institutions have the potential to harm Indigenous peoples and communities because Indigenous peoples' priorities are different from colonial institutions. Indigenous people are focused on finding and maintaining balance through spirit and ceremony, collective well-being, heart-centred outcomes and being in ethical relationships. As an Indigenous health re-searcher, my number one priority is maintaining longterm reciprocal and respectful relationships. It is my opinion that Indigenous communities should hold the research funds and carefully choose the researchers they want to co-create with. Indigenous sovereignty means Indigenous communities choose the research topics, hold the funds, and choose the re-searchers, which would preferably come from our own territories and are recognized community members. 4.2 My Relational Accountability Relational accountability is demonstrated in four ways: how the research topic is chosen, the methodology used to collect the data and build relationships, the analysis process and how we make meaning of the data, and the knowledge translation of the re-search outcomes (Wilson, 2008, p. 107). I will share these four ways of conducting relational accountability in my digital storytelling re-search. I knew that the stories that the participants were gifting me in our Women Warriors program needed a public platform. I knew it was my responsibility – because of my relationship DST Women’s Health Advocacy Tool 41 with the participants and my relational accountability to them – to find a way to share their stories and empower them to advocate for themselves (Wilson, 2008; Kovach, 2009; Absolon, 2011). I recognized how important it was for me to be connected to my Métis culture and identity in order to be able to conduct community based participatory action re-search because I had an in-depth understanding of intergenerational trauma from my own family history and how the distal determinant of colonization impacted Indigenous women’s health through my time facilitating Women Warriors (Czyzewski, 2001, p. 4). My ability to support Indigenous women on their healing journeys including the exploration of residential school attendance was dependent on me having done similar healing work with my family. This digital storytelling research is a reflection of my own history, and my journey of holistic health and healing. I have done my best at every step on this re-search journey to “accurately reflect and build upon the relationships between the ideas and participants….to reflect an understanding of the topic that is shared by researcher and participants alike” (Wilson, 2008, p. 101). I never assume anything about this re-search and I always ask for clarity on the meaning of things, but I also have an internal shared knowing with the storytellers because I feel my own story reflected in their stories. I felt a connection to Absolon’s (2011) “The Petal Flower” Framework (p. 51) because at the center of my own re-search was “Self” and my “location, memory, motive, and search for congruency” were all influencing my search for my Indigenous re-search methodology (p. 67). The stem of my framework became the methodology of Indigenous digital storytelling because I knew these stories needed to be told by and for Indigenous women and that their voices needed to be central to this re-search. I had an internal knowing, which is also apart of the Indigenous research process, that Indigenous women needed a tool to advocate for their own health care needs, DST Women’s Health Advocacy Tool 42 and that I could not do this advocacy for them (Kovach, 2009; Absolon, 2011). I also recognized that as an “insider” re-searcher I needed to be humble on this journey because I belonged to this community of Indigenous women as a member and I had a “different set of roles and relationships, status and position” (Smith, 1999, p. 140). I did not want to position myself as an expert on their lived experiences, which is why I carried out this re-search through the lens of Indigenous feminism (Green, 2017). I also did not want to impose my own beliefs about what holistic health was for each storyteller because I understood the dangers of a “pan-Indigenous” approach to health and forcing “pan-Native” healing techniques on different Indigenous cultural groups. The academic article, A Colonial Double-Bind: Social and Historical Contexts of Innu Mental Health by Samson made a lasting impression on me in the course, WGST 305 Counselling Indigenous Women (as cited in Kirmayer & Valaskakis, 2009, Chapter 5). This article highlighted how the colonial government tried to impose Plains Indian cultural practices including smudging and sweat lodges on the Innu of Labrador-Quebec and how this colonial violence exacerbated the poor mental health outcomes of the Innu (Kirmayer & Valaskakis, 2009, p. 112). Because I wanted to include First Nations, Métis and Inuit women in this re-search I knew to be humble and let them lead me in their cultural knowledge and practices. I also recognized within myself the ability to be a good listener and storyteller, which I inherited from my dad because he is a wonderful storyteller. We have spent many hours together doing the “kinship-visiting” approach so that he could teach me about our kinship relationships, and I could reclaim my Métis “teachings, songs, stories, values, dignity, and land” (Gaudet, 2019, pp. 47-48). Stories are the lifeblood of Indigenous communities and the way that Elders pass their wisdom to future generations. To be gifted with stories is to honoured by your DST Women’s Health Advocacy Tool 43 community and requires you to be responsible for the greater good. It also means respecting the storyteller and story enough to listen with an open heart and preparing to receive the stories. I have learned how to listen, which is a special skill that Indigenous communities value, because it requires “thinking mutually” which means the “position of the listener and the teller will thus have an impact on what is told, and both parties carry responsibility for the knowledge” (Anderson, 2011, p. 21). My dad teaches me how to be a good leader through his own life stories, which often has multi-layered meaning. Elders share teachings as a form of “reciprocity in relationships” so that we can learn how to live in good relations with each other (Anderson, 2011, p. 73). Living in reciprocity is fundamental to our survival – the collective always comes before the individual. Métis Elder, Maria Campbell states, “the quality of oral history is based on the quality of the relationship between the teller and the student” (Anderson, 2011, p. 20). Being a good listener requires a huge investment of time and energy on behalf of both the Elder and the recipient. This investment means respect, reciprocity, and responsibility that outsiders of Indigenous communities are often not privy to because traditional knowledge comes with deeper cultural teachings (Anderson, 2011). I knew that Indigenous digital storytelling was a good fit for me as an Indigenous health re-searcher because I knew how to listen, how to extract the wisdom from a story, what my responsibilities were when someone gifted me a story, and how I could reciprocate the knowledge gifted to me. I knew that the act of storytelling was a way for women to process their holistic life history and the interconnectedness of all things in the world including their relationships with people, plants, animals and spirit (Smith, 1999; Wilson, 2008; Absolon, 2011; Kovach, 2009). My relational accountability in the analysis of this re-search is the co-creation of meaning (Kovach, 2009). I did not rely on my own interpretations of the transcripts because I know the DST Women’s Health Advocacy Tool 44 fundamental principal of Indigenous re-search is, “searching for knowledge and the consequent transmission of Indigenous knowledge happens through relationship connections” (Absolon, 2011, p. 125). The storytellers and I co-constructed the digital stories, and I have tried my best to include them in the analysis of this data to maintain the holistic quality of it and the cultural concepts inherent in each of their backgrounds (Smith, 1999; Wilson, 2008; Kovach, 2009). After I finish writing my research paper I will email it to them and continue to ask for clarification. My relational accountability for the Indigenous knowledge translation event, Legacy in Yellowknife, NT was to my ancestors, my family, my community and my co-creators of this research. It was an honour to conduct Indigenous health re-search on my ancestral homelands and every morning I laid down medicine in the Great Slave Lake and prayed for guidance on this journey. Absolon (2011) stated protocols and honouring our ancestors are important processes in re-search and apart of relational accountability. “Research with a consciousness of Spirit also implies an awareness and understanding of enacting research with heart. Several concepts such as relationship, circle process, community, Elders and working from the heart are methodological tendencies of Indigenous searchers. All of the searchers attended to relationship in their search, calling for the enactment of Indigenous protocols to identify themselves and their purpose, create good setting and reciprocate the sharing and witnessing of their search processes” (p. 124). I also followed protocol at the iKT event by asking a local Elder (with proper protocol) to say the opening prayer in her language. I also gifted the storytellers beaded leather hearts as a token of my appreciation for their hard work and a symbol of our heart connection through this re-search project. When the iKT was done I made sure that I acknowledged all the people that contributed to my success including my ancestors and my dad and my family that attended the event. DST Women’s Health Advocacy Tool 45 4.3 Ethical Re-search The 4 R’s of Indigenous research guided my ethical re-search: respect, relevance, reciprocity and responsibility (Riddel et al., 2017, p. 8). I practiced “mindful reciprocity” with my co-creators by putting our relationship above all else in this research process and consciously being aware of how I may reciprocate the opportunities that came to me because of this research. Riddell et al. (2017) stated, “The strongest theme in the literature on Indigenous research ethics is that every stage of research relies on relational processes—from the researchers' own intentions in seeking particular knowledge, through the design and implementation of methodologies and gathering of consent, to the analysis and dissemination of knowledge” (p. 8). The phrase, “nothing about us without us” rang in my ears at all times. We collaborated on every aspect of this research and I informed them every time I presented on and disseminated the results of our digital storytelling re-search. For example, this past summer I did several online presentations and I asked them if they were available to attend. I also thanked them every time I gave a presentation and I acknowledged them as my co-authors on our abstract for the Alberta SPOR Virtual Institute to be held online from October 13th to November 20th, 202022. I also offered to include them in the coding of the transcripts and I will email them this paper for review before I submit it to my professor. I want to respect their ability to speak for themselves and offer them the opportunity to clarify the ways that I framed this re-search. I suggest that a storyteller’s feedback on my facilitation of this re-search demonstrates the importance of pre-existing relationships in Indigenous health re-search and how it builds trust and respect within the relationship. I think what made it more comfortable is because I … she facilitated the fitness program for, you know, First Nations or I think it was Métis, and she was welcoming, so that kind of made it, made me feel more comfortable and she was like, you know, 22 https://absporu.ca/event/virtual-institute-2020/. DST Women’s Health Advocacy Tool 46 welcoming with open arms and very understanding …you could just sense like she’s … very caring. And then I felt comfortable and then when I was talking with her, I talked about, you know, telling her about my story, she was, there was no judgement, nothing, she’s just really caring and understanding and I felt comfortable with that. It would’ve been different if I didn’t know the person, but then if they kind of looked at me and I don’t know it, you know, I think it has a lot to do with her … being, oh what is it called … passionate or humble. Moreover, several storytellers stated that my insider’s perspective as a Métis womxn was important for building ethical relationships for several reasons including: added a level of comfort and trust that may not immediately exist with an outsider researcher; relational accountability; relational interconnectedness as Indigenous peoples; commonality between Indigenous peoples because of shared history of colonization; women's relationships have shared intersectional oppressions (gender/race/colonization). First of all Shelley's Métis so right off the bat there's this sense of community even among, between like Inuit and Métis, First Nations. We're not in the same group but we are, like we're all in the same boat as minorities. So the fact that she is Métis, the fact that she was working on this project with someone from Yellowknife who I knew in the past and the fact that my name was brought up with someone I knew personally. So I had these personal connections and I just find that like Inuit, First Nation, Métis are pretty open with each other about personal experience, traditional beliefs. Like I, if I go down to B.C. and I like visit with the Haida people there's this sense of openness or if like Ojibway from Ontario came up to Nunavut and wanted to work towards healing and finding truth I find that there's a very common, that's a common goal among indigenous people. And the fact that they're women, like when you're a woman and you can speak openly with other women it's fun. I also did my best to protect the storytellers from colonial violence and I took full responsibility for any issues the storytellers had with our re-search. For example, one of the storytellers called me after her interview with my research assistant, Lily23 and told me she felt uncomfortable with her lack of introduction, and intrusive interview style. I told her I would take responsibility for Lily’s behaviour by speaking with her and asking her to self-reflect on why her 23 Lily is a pseudonym to protect the identity of the researcher. DST Women’s Health Advocacy Tool 47 behaviour would be considered insulting to the storyteller. Lily’s reflections demonstrated her understanding that her position of power and lack of introduction were problematic for the storyteller (Appendix J). I can understand why these very personal questions would seem imposing and potentially judgement-laden. These questions likely would have been received completely differently had Shelley posed them, as there was a pre-existing relationship there and mutual trust. Moving forward, I was much more conscious of this and tried to be much more gentle, flexible, and conversational in the way that I posed questions. Like healthcare providers, researchers are often blind to the ways that they may perpetuate power differentials in their interactions and in their work, and this was a very real risk in this interview. (Lily, 2020) The reciprocity and empowerment portion of this ethical re-search was critical to its success and it had long lasting impacts on the storytellers themselves. Bourassa et al. (2020) stated, “A directive of Indigenous research methodologies is not to collect knowledge just for the sake of collecting knowledge but to apply this knowledge in a good way. By achieving full engagement of Indigenous communities in research, community is left with an asset, something they can build on. Any research undertaken should aim to prioritize capacity building and practices that will enhance self-determination” (p. 3). I demonstrated that I valued these women’s time, knowledge, and emotional labor by paying living wages while we worked on their stories, which took approximately one week. I also gave them a USB of their digital story so they could show it to whomever they wanted. An example of reciprocity and empowerment within this research project is one of the storytellers asked me for a reference letter (Appendix K) and presented her digital story as part of her application for a Habitat for Humanity House in Lloydminster, Alberta. Her application was successful and she moved into her new home in August 2020. The storyteller’s selfdetermination in this re-search resulted in her securing long-term housing, a social determinant of health, for herself and her grandchildren (one lives with her full-time and the others visit her DST Women’s Health Advocacy Tool 48 often). Another example of reciprocity and empowerment was a storyteller’s use of her digital storytelling throat singing soundtrack for a CBC North program that she received credit for. I also referred her as a guest for the Sickboy podcast24 after my interview with them, and I am cofacilitating a writing workshop with her for a Maskwacis Micro learning Series on Indigenous writers/writing in October. Furthermore, one of the storytellers keeps asking me to come to her home community in the Northwest Territories and do a digital storytelling workshop with Elders. She has volunteered to do the interpreting from Tłı̨ chǫ to English and will be my community helper. I appreciate her enthusiasm and I hope to one day be given the opportunity to co-create digital stories with Elders. I believe that reciprocity on behalf of researchers should be to subtitle all digital stories in the traditional language of the participants so that we contribute to cultural resurgence and revitalization in the communities that we are co-creating with. I did not have enough time last summer to subtitle Dorothy’s story in Tłı̨ chǫ which I regret, but if I am fortunate enough to do another digital storytelling research project I will incorporate it into my research plan and budget for translators. 5. Conclusions This re-search provides insights on the methodology of Indigenous digital storytelling, which reflects the cultural aspect of traditional oral storytelling combined with technology for a contemporary format. The interviews with the storytellers provided insights on how to conduct culturally relevant and ethical re-search with Indigenous women. The storytellers reflections on the digital storytelling process revealed they were motivated to participate because they wanted 24 I referred storyteller Tanya Roach as a guest on Inuit women’s health. https://www.cbc.ca/listen/cbc-podcasts/434- sickboy/episode/15793036-women-warriors-advocating-for-indigenous-womens-health. DST Women’s Health Advocacy Tool 49 to share strength based stories and resiliency. The storytellers embarked on emotional journeys with the facilitator, but the fact they had control over the process and the knowledge translation event –self-determination – allowed them to feel safe enough to be vulnerable and brave enough to share their truths. Their stories provided evidence that the distal determinant of health – colonization and the legacy of residential school – continues to impact their health. Some of the storytellers found healing in speaking their truths and received validation from the public that their stories were important and needed to be told. Central to this re-search process was the facilitators’ pre-existing relationships with the storytellers and her Métis identity. The power and beauty of this re-search come from the relationships between the facilitator and her co-creators, her family, her community and her ancestors. Indigenous women need more decolonized spaces to share our health journeys and openly discuss the systemic racism embedded in institutions whether that is in academia (facilitators experience) or health care (storytellers experience) because our collective healing is dependent on truth telling and supporting one another. This decolonized re-search journey allowed for many opportunities for reciprocity and empowerment of the storytellers including community and family healing, improving Indigenous peoples’ social determinants of health, educating on truth and reconciliation, celebrating survivance, and decolonizing our stories. DST Women’s Health Advocacy Tool 50 REFERENCES Absolon, K.E. 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You Can Leave Our Community Now.”: Geographies of Responsibility, Relational Ethics, DST Women’s Health Advocacy Tool 54 Acts of Refusal, and the Conflicting Requirements of Academic Localities in Indigenous Research. ACME: An International E-Journal for Critical Geographies, 17(3), 750–779. Truth and Reconciliation Canada (2015). Honouring the Truth, Reconciling for the Future: Summary of the Final Report of the Truth and Reconciliation Commission of Canada. Winnipeg: Truth and Reconciliation Commission of Canada. UNDRIP (United Nations Declaration on the Rights of Indigenous Peoples). (2013). Retrieved from https://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf. Vizenor, G. (2008) Survivance: Narratives of native presence. Lincoln, NE: University of Nebraska Press. Wiart, S. (2020). My Northern Healing. Up Here Magazine. Retrieved from https://uphere.ca/articles/my-northern-healing. Wicklum, S., Sampson, M., Henderson, R., Wiart, S., Perez, G., McGuire, A., Cameron, E., Willis, E., Crowshoe, L. (Lindsay), & McBrien, K. (2019). Results of a Culturally Relevant, Physical Activity-Based Wellness Program for Urban Indigenous Women in Alberta, Canada. International Journal of Indigenous Health, 14(2), 169–204. https://doi.org/10.32799/ijih.v14i2.31890 Wiebe, S., (2019). “Just” Stories or “Just Stories”?: Mixed Media Storytelling as a Prism for Environmental Justice and Decolonial Futures. Vol 5 No 2 (2019): Engaged Scholarship and the Arts. DOI: https://doi.org/10.15402/esj.v5i2.68333. Wilson, S. (2008). Research is ceremony: indigenous research methods. Winnipeg, Manitoba: Fernwood Publishing. DST Women’s Health Advocacy Tool 55 APPENDIX A: INTERVIEW GUIDING QUESTIONS Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories. April 3, 2020 Principal Investigator (Researcher): Shelley Wiart. Phone: 780.872.0877 Email: Shelley@womenwarriors.club This interview will take place after the participants present their digital stories in a knowledge translation event. (These questions are subject to revisions depending on location and demographic of participants). Each interview will be recorded, with consent of the participant, and transcribed without identifying information. Audio will be deleted after transcription. Date of Interview: Time of Interview: Start_________ Participant Code: Finish_________ The researcher present the interview consent form and answer any questions the participant may have. The interview begins after the consent form is signed. Turn on audio recorder. 1) How old were you on your last birthday? 2) How do you self-identify? (First Nations – status or non-status), Metis or Inuit 3) What is the highest formal education you have completed? (Elementary, high school, college or trade school, university undergraduate, university graduate, or other). If program not completed, what is the highest year attained? 4) What is the highest formal education your father has completed? (Elementary, high school, college or trade school, university undergraduate, university graduate, or other). If program not completed, what is the highest year attained? 5) What is the highest formal education your mother has completed? (Elementary, high school, college or trade school, university undergraduate, university graduate, or other). If program not completed, what is the highest year attained? 6) Are you currently employed outside the home? • If so, for how long? • What is your occupation? • Do you work full or part time? • Tell me a little about what you do at your job. 7) Including yourself, how many people live in your household? 8) How many children do you have? • How many of them are your own • How many are adopted • How many are your stepchildren 9) Did you attend residential school? 10) Did your mother or father attend residential school? DST Women’s Health Advocacy Tool 56 11) Do you speak your traditional language? 12) In general, how would you rate your health? (Excellent, Very good, Good, Fair, Poor) 13) In general, how would you rate your mental health? (Excellent, Very good, Good, Fair, Poor). 14) Have your visited a doctor or health care provider in the past twelve months? If no, please explain. 15) Do you have a regular family doctor? If no, please explain. Participation in Digital Storytelling A1. What skills do you think you developed participating in this project? • Probe: What did you like the best about doing this project? What did you like the least? A2. How did it feel to share your culture and/or healing practices? • Probe: Can you tell me a little about your digital story? Feelings/emotions producing and editing it? • Was there any surprising element to sharing your digital story? • Would you do it again? Would you recommend to your friends and family to participate in this process? A4. Tell me about your experience presenting your digital story to an audience. • Probe: Feelings/ Emotions/Coping strategies…Were you nervous? Excited? • Did you feel like you were educating the audience on your culture and healing practices? • Were there any audience questions that felt culturally unsafe or made you feel anxious? • How did it feel to be involved in the community knowledge translation event, Legacy: Indigenous women’s health stories in Yellowknife last August? • How do you think your digital story can educate or inform other people? A5. Do you feel you have a better understanding of your own health story after completing this project? • Probe: Significant events/feelings/emotions after completion of digital story. A6. Was there any element of your story that you wish you could share with your doctor or healthcare provider? • Probe: What part of the story would help your doctor better understand the challenges or barriers to you accessing health services. A7. Tell me about your experience with digital storytelling process? • Did you have all the skills you needed to record your story? • Did you feel supported in the process? • What kinds of worries or concerns did you have about creating a digital story? • Did you feel prepared for the public speaking? • Did you feel safe or unsafe presenting your story? • What surprised you about the process of creating a digital story? • What suggestions do you have to make this process better? A8. Any final thoughts you would like to share about this digital storytelling process? DST Women’s Health Advocacy Tool 57 APPENDIX B: INTERVIEW CONSENT FORM Interview for Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories. May 3, 2020 Principal Investigator (Researcher): Shelley Wiart. Phone: 780.872.0877 Email: Shelley@womenwarriors.club This consent form is only part of the process of informed consent. If you would like more detail about something mentioned here, or information not included here, please ask. Take the time to read this carefully and to understand any accompanying information. You will receive a copy of this form. WHAT IS THE PURPOSE OF THE INTERVIEW? The purpose of this project is to allow Indigenous women to share their traditional knowledge, and Indigenous healing practices in their daily lives and conceptualize their own health care stories and service needs. Now we want to ask you some questions about your experience. We will keep your answers confidential and will only report them anonymously. We will tape record the interviews so that the researchers can listen to them again at a later time. Interviews will be approximately one hour long. The session time will be agreed upon by yourself and the interviewer. WHAT ARE THE RISKS? The fact that this is an interview, and your answers may be more in depth than they would be for a simple questionnaire means that the researcher who reviews the tapes may be able to identify you. If this is the case, they will not make this information known, nor will it be recorded in any way. Your answers will be kept confidential and no records bearing names will leave the control of Shelley Wiart, the primary investigators of this program. CAN I STOP THE INTERVIEW? You are allowed, at any time, to stop the interview if you are uncomfortable. Likewise, the interviewer is allowed to stop it if they are uncomfortable. With your permission we will keep the data collected to that point. If you do feel uncomfortable at any point during this process please inform Shelley and she will provide you with a list of free mental health resources that you may access at any time. WILL I BE PAID FOR PARTICIPATING? You will be financially compensated $100 for a maximum of a one-hour interview. WILL MY RECORDS BE KEPT PRIVATE? All results of the interview will be kept confidential. No identifiable information will be published in any publications or presentations resulting from these interviews. All information will be coded and no names will be identified. No records bearing names will leave the control of Shelley Wiart, the primary investigators of this program. DST Women’s Health Advocacy Tool 58 CONSENT: I have read the Interview Consent Form regarding this research study, and all of my questions have been answered to my satisfaction. My signature below confirms that: • • • • I understand the expectations and requirements of my participation in the research; I understand the provisions around confidentiality and anonymity; I understand that my participation is voluntary, and that I am free to withdraw at any time with no negative consequences; I am aware that I may contact the researcher, Shelley Wiart or the Office of Research Ethics if I have any questions, concerns or complaints about the research procedures. Name: _______________________________________________ Date: ______________________________ Signature: _______________________________________________________________ If you are willing to have the researcher contact you at a later time by e-mail or telephone for a brief conversation to confirm that I have accurately understood your comments in the interview, please indicate so below. You will not be contacted more than six months after your interview. ________ Yes, I would be willing to be contacted. _______ I would like to receive a copy of the transcripts from research interview by e-mail address: ___________________________________________________________________ or mailing address: ______________________________________________________________________ A signed copy of this consent form has been given to you to keep for your records and reference. This study has been reviewed by the Athabasca University Research Ethics Board. Should you have any comments or concerns regarding your treatment as a participant in this study, please contact the Office of Research Ethics at 1-800-788-9041, ext. 6718 or by e-mail to rebsec@athabascau.ca. DST Women’s Health Advocacy Tool 59 APPENDIX C: CONTINUED CONSENT FORM Interview for Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories. August 16, 2020 Principal Investigator (Researcher): Shelley Wiart. Phone: 780.872.0877 Email: Shelley@womenwarriors.club This consent form is only part of the process of informed consent. If you would like more detail about something mentioned here, or information not included here, please ask. Take the time to read this carefully and to understand any accompanying information. You will receive a copy of this form. WHAT IS THE PURPOSE OF THE CONTINUED CONSENT? The purpose of this project was to allow Indigenous women to share their traditional knowledge, and Indigenous healing practices in their daily lives and conceptualize their own health care stories and service needs. It has been one year, August 15th, 2019 since we presented your digital health stories at the Indigenous knowledge translation event, Legacy: Indigenous Women’s Health Stories in Yellowknife, NT. Now we want to ask you if you consent to keeping your digital health story on the website: www.womenwarriors.club. You are the owner of your digital health story, and as such have the right to withdraw your digital story from the website. Please place a check mark below to inform the primary investigator, Shelley Wiart of your consent decision. CONSENT: I have read the Continued Consent Form regarding this research study, and all of my questions have been answered to my satisfaction. ______ Yes, I consent to my digital health story remaining on the website: www.womenwarriors.club. ______ No, I do not consent to my digital health story remaining on the website: www.womenwarriors.club. My signature below confirms that: • I understand that my participation is voluntary, and that I am free to withdraw at any time with no negative consequences; • I am aware that I may contact the researcher, Shelley Wiart or the Office of Research Ethics if I have any questions, concerns or complaints about the research procedures. Name: _______________________________________________ Date: ______________________________ DST Women’s Health Advocacy Tool 60 Signature: _______________________________________________________________ A signed copy of this consent form has been given to you to keep for your records and reference. This study has been reviewed by the Athabasca University Research Ethics Board. Should you have any comments or concerns regarding your treatment as a participant in this study, please contact the Office of Research Ethics at 1-800-788-9041, ext. 6718 or by e-mail to rebsec@athabascau.ca. DST Women’s Health Advocacy Tool 61 APPENDIX D: AUDIENCE QUESTIONNAIRE FOR INDIGENOUS WOMEN’S DIGITAL HEALTH STORIES Reflecting on Digital Stories & potential for change in practice: 1. Reflecting on the digital stories, what events or factors do Indigenous women face that contribute to the health challenges they experience? a) Were any of these events or factors a surprise or new to you? If so, please explain. b) What events or factors do you feel you could address in your interactions with Indigenous patients? How would you do so? c) How did you address these events or factors in your practice before you viewed the digital stories? 2. Which of the stories resonated most with you? 1) Fragmented by Maxine 2) Broken Trust by Beatrice 3) Secrets Revealed by Sheryl 4) Living Our History by Dorothy 5) Tuq&urausiit by Tanya. a) Why was this/these stor(ies) effective for understanding Indigenous women’s health? b) Was there any specific information in the presentation or digital stories that made you reflect on your attitudes, choices, and understandings towards adopting clinical and service practices that are culturally safe? If so, please explain. DST Women’s Health Advocacy Tool 62 APPENDIX E: Lily’s SELF-REFLEXIVITY ON THE INTERVIEW PROCESS The most important learnings I gained from this process came from my interview with Participant X. Even though certain parts were uncomfortable, I’m happy that it was my first interview, as I learned a lot from it and was able to apply those learnings to interviews with the other co-creators. When I read the transcript from Participant X’s interview, I feel uncomfortable with the way that I come across . . . I was very concerned with trying to ask the questions on the interview guide to make sure that we were ‘covering’ the topics that I thought Shelley might want to write about. I think I made 2 mistakes in the process: first, I didn’t share my own background, how I came to be involved in these interviews, and the fact that I had already viewed all of the digital stories. This was exacerbated by the fact that I was just an impersonal voice on the other side of the phone and we were unable to see each other’s faces or our physical cues. Even though I know that it is important, in accordance with Indigenous research protocols, to situate myself and build relationship through introduction, I got nervous and I forgot to do so. This is not a mistake that I will make again, as it seems to set the tone of “I’m the researcher, and you are the one being researched”. This leads me to my second mistake in this interview: I prioritized staying true to the interview prompts, even when (upon reviewing the transcript I can now see) there were some signs that they were causing tension. Due to my position as a researcher from settler background, and my failure to open up and share details about myself in the beginning, I can understand why these very personal questions would seem imposing and potentially judgement-laden. These questions likely would have been received completely differently had Shelley posed them, as there was a pre-existing relationship there and mutual trust. Moving forward, I was much more DST Women’s Health Advocacy Tool 63 conscious of this and tried to be much more gentle, flexible, and conversational in the way that I posed questions. Like healthcare providers, researchers are often blind to the ways that they may perpetuate power differentials in their interactions and in their work, and this was a very real risk in this interview. In an attempt to encourage Participant X to be as detailed as possible in her answers, I posed questions as if I hadn’t seen her digital story. My logic was that I didn’t want her to gloss over details that she figured were already apparent in her story. In reality, I had viewed all the stories and was quite enthusiastic about their potential impact, which is one of the reasons why I think Shelley asked me to conduct these interviews. By failing to communicate my relationship to the research and my own background and intentions, I missed a major opportunity to set a positive and respectful tone. I am very happy that Participant X was assertive enough to nip this in the bud and give me constructive feedback that strengthened the interviews going forward. DST Women’s Health Advocacy Tool 64 APPENDIX F: REFERENCE LETTER FOR MAXINE DESJARLAIS FOR HABITAT FOR HUMANITY July 8, 2020 Dear Selection Committee: Re: Letter of Support for Maxine Desjarlais for Habitat for Humanity Housing It is my pleasure to provide this letter of support for Maxine Desjarlais. Maxine is a member of Frog Lake First Nations, and was raised on Fishing Lake Metis Settlement, Treaty 6 Territory, Alberta. I have known Maxine for three years as a former participant of my Indigenous focused holistic health program, Women Warriors and as a digital storytelling co-creator in my research project, Digital Storytelling as an Indigenous Women’s Health Advocacy Tool: Empowering Indigenous Women to Frame Their Health Stories. Last summer, I had the pleasure of working with Maxine to create her own digital health story, Fragmented in which she told of the story of her mother’s residential school attendance and the intergenerational trauma that Maxine experienced because of it. The purpose of this story was to inform health care providers about Indigenous peoples health including the historical trauma caused by residential schools and provide cultural safety training to health professional and enact reconciliation in healthcare. Maxine’s story was integral to the success of this project by creating her own digital story, and sharing it at several knowledge translation events including one held in Yellowknife, Northwest Territories last August. Maxine demonstrated her aptitude for leadership and excellent public speaking skills by doing media interviews with CBC North radio, print and television, and being a member of the digital storytelling panel at the Yellowknife event. She has taken an active role in sharing her digital story at Fishing Lake Metis Settlement Orange Shirt Day last September and with her co-workers at Midwest Family Connections. Maxine is committed to improving the wellbeing of Indigenous peoples health by sharing her own story of intergenerational trauma and healing. She is proud of her Metis heritage and volunteers her time to share her cultural knowledge and skills, such as jigging at events held at the Lloydminster Native Friendship Center. Maxine is also an ordained Minister and officiates many weddings in Lloydminster and the Native communities surrounding Lloydminster. She is a proud Lakeland college graduate and she wants to empower other Indigenous women by encouraging them to attend post-secondary education. Maxine has shown commitment and dedication to achieving her dream of being a college graduate and continuing on her postsecondary journey with Athabasca University while working full-time at Midwest Family Connections. Maxine is a devoted grandmother and spends much of her free time with her grandkids. Maxine is an excellent candidate to receive the opportunity to purchase a house with Habitat for Humanity. She is a responsible person with a larger vision of helping Indigenous peoples DST Women’s Health Advocacy Tool 65 overcome intergenerational trauma. She is an excellent advocate for post secondary education as a tool of healing. She is a strong Indigenous community leader, especially in her faith and volunteering for cultural activities. Most of all, she is a devoted grandmother that spends most of her free time with her grandkids and this home would benefit her and her grandchildren. If you have any questions about this letter of support, please do not hesitate to contact me. I thank you for your time. Sincerely, Shelley Wiart (780) 872-0877