“Any Aboriginal Type Event… Is a Gift in Itself”: Situating the Research
Since I was 15,
I always had to do everything
I'm looking for peace,
I'm looking for truth,
I'm looking for trust,
I'm looking for ethics,
I'm looking for honesty.
Transparency (Victoria, Sharing Circle, March 24, 2017)
Over an hour into a sharing circle, Victoria reflected on her experience sitting in a circle of Indigenous women who were weaving something new and something safe, or as she said, “I'm looking for people who aren't afraid to speak the truth, that I can ally with, and relate to, and talk to.” Victoria and 13 other women were invited to participate in a 4-day, Indigenous-led, land-based retreat that took place in March 2017. The retreat was called Awakening our Wisdom (AoW) and was a joint venture of the Positive Women's Network, a Vancouver-based support service organization for women living with HIV, and Red Road HIV/AIDS Network, which supports Indigenous women living with or at risk of HIV and/or hepatitis C virus (HCV). More specifically, Positive Women's Network and Red Road HIV/AIDS Network organized AoW to provide healing and wellness opportunities with a harm reduction approach for Indigenous women living with or at risk of HIV and/or HCV (Keira, written personal communication, February 1, 2021). AoW was pioneering because it brought together the HIV and HCV communities that had previously operated quite separately. This was in response to the federal government's evolving syndemic approach to HIV, HCV, and other sexually transmitted and blood-borne infections (STBBIs) (King et al., 2009).
Pewaseskwan (the Indigenous Wellness Research Group), co-located at Simon Fraser University and the University of Saskatchewan, led the research component and focused on exploring what healing and wellness looked like for Indigenous women living with or at risk of HIV and/or HCV. The term pewaseskwan is a Cree word that means “the sky is starting to clear” or “the weather is improving” and speaks to the research approach that the group seeks to reflect, which includes an optimism for a healthier future, a clearing of our beings from the clouds of colonization and privileging Indigenous ways to work alongside Western ways. The application for funding of AoW was accepted by the Canadian Institute of Health Research in October 2016, and the study received approval from the Research Ethics Board of SFU in March 2017 (study no. 2016s0637).
The retreat's goal was to provide a safe space for the women to consider their individual and collective wellness journeys as peers. It was also an important moment for each of the women in their living journeys to experience healing (Keira, written personal communication, February 1, 2021) as well as being a data-gathering event for this research. Indigenous research, as we will unpack, prioritizes relationality (Wilson, 2008) and blurs the boundaries between process and outcomes, seeing the two as interconnected and intertwined or, as Grace so eloquently reflected on her experience of the retreat,
I just saw this basket that was weaved.
And it feels like even though,
every one of us is a strand in that basket, it feels like we're now weaved. (Grace, Sharing Circle, March 25, 2017)
The weaving of baskets is an important image for this article and is something familiar to Indigenous people in Canada who use different materials to weave their baskets, whether it be sweet grass, a Métis sash, or, as is the case with the Coast Salish people of the Pacific Westcoast, cedar bark. According to Elder Sandy-Leo, the Cedar tree has spiritual significance for the Coast Salish people, who were able to use it to build their lodgings, tools, and canoes and create clothing and traditional regalia. The tree provides much for the people, and it is said the Cedar is their tree of Life. To be a Cedar weaver is more than to make baskets. There is a short season in which to collect the cedar bark while the water runs through the tree, and the weaver, in tune to the land and the tree, approaches this gathering in a sacred way. In preparing the cedar bark to weave baskets, the Elders teach that the stories and songs shared are also woven with good intentions. The weavers go out to gather together and return to tell stories together. We recognize the teachings embedded in the practice of weaving baskets and consider how to apply them to the process of research. It is our hope that this image will remain with you in your reading of this article and provide an image with which to understand its purposes.
Health Inequities and Indigenous Wellness
From an Indigenous perspective, the STBBI health inequities experienced by First Nations, Inuit, and Métis in Canada must be framed within the context of colonization, including the intergenerational trauma resulting from residential schools, the Sixties Scoop, and ongoing child welfare systems (Christian & Spittal, 2008; Fayed et al., 2018). These systemic factors have created intergenerational narrative reverberations (Young, 2005) that include “the loss of language, traditional cultural knowledge, and spiritual and relational practices, particularly family relationships” (Young et al., 2015). These are also at the root for increased burden of various STBBIs, including HIV, HCV, and HIV/HCV coinfection (Craib et al., 2009; Miller et al., 2011), despite the prevention, treatment, and disease management services that are available within the Canadian health care system (King et al., 2009; Sadler & Lee, 2013). As Indigenous people in Canada see it, HCV is a colonial illness, which necessitates that healing journeys must not be reduced to health care but include Indigenous cultural approaches (Fayed et al., 2018). Colonization and its domestic sibling, settler-colonialism, explicitly sought to disconnect Indigenous people from their land and cultures (Snelgrove et al., 2014). This disconnection, combined with a number of historical, socioeconomic, and structural determinants, is recognized as a key enabling factor in the health inequities currently faced by many Indigenous communities in Canada (Alfred, 2009; King et al., 2009).
Considering HIV, HCV, and HIV/HCV coinfections as colonial illness prompts us to consider approaches to health and wellness research that take a stand against reductionism, honoring the role of both qualitative and quantitative data, as appropriate. Elders Albert and Murdena Marshall's etuaptmumk–Two-eyed Seeing (Martin, 2012; Peltier et al., 2019) was used as a conceptual framework that shaped the various components of our research. For this project, it meant bringing together both Western and Indigenous ways of understanding health and wellness to inform the research design. Both perspectives were considered in concert when developing research outcomes, and identifying prevalent gaps and future recommendations (Coburn, 2015; Shorten & Smith, 2017). The statistical data highlight the STBBI burden, showing that although Indigenous people comprised 4.9% of the Canadian population, they represented 24.3% of all people living with HIV in Canada in 2017 (Haddad et al., 2018; Statistics Canada, 2017; Negin et al., 2015; Public Health Agency of Canada, 2016). Looking to British Columbia (BC), where this research took place, Indigenous peoples have been disproportionately represented in BC's HIV epidemic over the past decade. From 2008 to 2017, 8–17% of people newly diagnosed with HIV self-identified as Indigenous while only accounting for 6% of the general population (BC Centre for Disease Control, 2019). Although these data should provide ample motivation for further inquiry, we believe it is important to acknowledge the ways statistical data further stigmatize Indigenous people, causing harm by supporting deficit thinking and non-Indigenous solutions to colonial problems.
In our eyes, when reporting quantitative data related to Indigenous people, it is important to acknowledge the background of historical colonial power, the residential school system, and intergenerational trauma, including ongoing processes of health inequities and systemic discrimination that continue to cause Indigenous suffering (Coburn, 2015; Kim, 2019). With this in mind, we see the statistics speaking to and supporting the argument that colonialism shapes Indigenous experiences with all national authorities and institutions and continues to foster Indigenous peoples' mistrust of health care services specifically (Jacklin & Warry, 2011; Manitowabi & Maar, 2018). Western health care puts colonialism on display through a segmented approach; facilities typically focus on one thing, divorcing physical wellness from mental, emotional, and social wellness and often ignoring the spiritual components of wellness altogether (Fayed et al., 2018). The underlying causes of the aforementioned health and social inequities, we argue, are directly related to the ways that Western health care has neglected the Indigenous experience of national institutions and failed to offer wholistic spaces for Indigenous health and wellness journeys. Therefore, as Dorothy explains,
Any Aboriginal-type event
is welcoming and adjusting for everyone and
that is a gift in itself. (Dorothy, Sharing Circle, March 26, 2017)
The AoW retreat is a response to this understanding of the statistics and was facilitated by Indigenous people for Indigenous people, using an Indigenous approach to research that offered a safe space and formed connections between health and wellness that many Indigenous women with living and lived experience of HIV and HCV have named as absent in their wellness journeys (Fayed et al., 2018; King et al., 2009).
This article weaves a basket from the warps and wefts that were gathered, which are the Indigenous women and their stories shared at the AoW retreat. As the basket takes shape, we discuss the approach taken for data gathering and analysis, explaining the ways they support the use of Indigenous methodologies in health research while critiquing the potential colonizing impacts of Western research. Once complete, our focus shifts to what the basket may contain, the teachings found through the stories of Indigenous women's experiences in health care. The article concludes that the insights gained provide us a minimal view of how to identify the health care places and spaces that require reconceptualization, decolonization, and gender-specific Indigenous approaches.
“Our Protocols Are Good, They're Safe”: Indigenous Data-Gathering Practices
The retreat adopted Indigenous methodologies focused on strength-based and culture-based methods and, most importantly, provided a literal retreat for the women whose lives in the Vancouver Downtown East Side (DTES) were filled with chaos and crisis. Indigenous people recognize that land- and culture-based retreats are effective interventions for restoring and promoting physical, mental, emotional, and spiritual wellness (Krementz et al., 2018), and one of the critical goals of the AoW retreat was to align methods with outcomes.
The Elders bring energy
teachings and learning. It's been emotional,
Especially knowing any Elders.
The energy they bring, the teachings they bring,
the learning. (Ava, Sharing Circle, March 24, 2017)
Many of the women, such as Ava, affirmed the approaches used in data gathering as meaningful, as exemplified in her choice of words to describe her experience. We recognize the central role that relationships played in supporting this experience and are reminded that the integrity of any data-gathering method should not be measured by its adherence to theory, although that is important, but by listening to the feedback that participants offer based on their experiences of those methods. This is a key distinction of an Indigenous methodology that prioritizes giving back (Kovach, 2009) at all stages of a research project. Ava's words previously mentioned read as an internal validation and example of how research done with Indigenous people should enrich their lives (Wilson, 2008).
Indigenous methodologies also facilitate decolonizing perspectives while avoiding making them the central focus (Kovach, 2009). Unlike Western methodologies that emphasize theory first, Indigenous methodologies emphasize relationality first. Theory may still provide guidance in the development of research methods, but it comes second and is always in service of the relationships, grounded in ceremonies and the land (Keira, written personal communication, February 1, 2021). For AoW, much thought was given to the geographic space where the research would take place. The Springbrooke Retreat Centre, located on the sacred ancestral lands of the Kwantlen First Nation, provided a landscape distinct from the DTES where the women lived. For example, the lived experiences of Indigenous women in the DTES are woven with strength, resilience, and survival in the face of not knowing where their next meal is coming from, of perpetually needing to secure as safe a drug supply as possible (prescribed or sourced from the street), and of negotiating fractured systems not designed for those they are supposed to serve (Keira, written personal communication, February 8, 2021).
The retreat was organized to integrate land-based wellness practices, including sequential sharing circles, culture-based research, and post-retreat sharing circles, all of which were audio taped and transcribed. Sequential sharing circles build on one another and include the same participants, with the goal of adding layers and depth to the emerging conversations. This approach builds trust between those who share the circle and may create space for deeper understandings of sensitive issues to emerge as well as facilitate healing (Jacklin et al., 2016; Marsh et al., 2015; Young et al., 2015). The circles included six to nine women, and each began with an introduction and smudging ceremony hosted by an Elder, who explained the importance of traditional ceremonies and their significance in the journey of healing.
We can trust that we will be fine,
following our protocols.
Our protocols are good, they're safe. (Elder Pearl, March 24, 2017)
These words reverberate with Wilson's (2008) explanation that Indigenous research is ceremony; it is most important that they note the role that Indigenous epistemology and ontology play in supporting Indigenous participants in culturally relevant and safe research practices.
A key aspect of Indigenous research is awareness of the pacing of research activities and becoming attentive to participants' engagement and energy. Knowing when to break and ensure everybody is on the same page demonstrates a commitment to prioritizing relationships in research. The organizers were conscious of the importance of informal activities to support building relationships and of providing outdoor activities for the women to find healing in nature. Weaving informality with formality expressed a particularly Indigenous approach to research that helped the gathered individuals become a community of women. One evening, the women gathered around a sacred fire to share wisdom. As they began, a sudden and surprising rain dampened the activity. Inspired by the downpour, the women agreed to move to the hot tub to share their stories. Soaking in waters is a sacred part of West Coast traditions, with modern hot tubs taking the place of healing hot mineral pools. The women were aware that sharing their wisdom gained from life experiences needed to be done in a good way for the betterment of their community and for other women experiencing similar issues in the world. Their creation of healing spaces to share demonstrates the principle of reciprocity in research (Keira, written personal communication, February 1, 2021).
Weaving stories takes time, just as it is with the weaving of cedar bark baskets. The process of making a basket is composed of two parts. The warps or “bones” are held together in parallel as wefts are drawn over and under each bone. In our conceptualization, these bones are the strong and resilient Indigenous women, and the wefts are their stories that bond them together. The use of Indigenous traditions, cultural protocols, and Elders to facilitate the retreat was essential for process and nurtured healing, resilience building, and spiritual connection, aspects of research that are largely ignored in the Western health research.
Weaving the Circles That Form the Basket: Approaches to Analysis
Following the image of the basket, it has become clear to us that, as a group of authors, our role is that of the weavers. Over the course of several months, we have invited a diverse group to consider our weaving: Indigenous people and allies, some who have lived and are living with the experience of HIV/HCV, some who carry Indigenous knowledge, and others who have journeyed through and are fluent in Western academics. The process of analysis and writing took time and proceeded in a circular way. Circularity rather than linearity reflects the interrelatedness of things (Wilson, 2008), the medicine wheel being one example, representing the physical, spiritual, emotional, and mental self (Fayed et al., 2018).
Likewise, we approached analysis in a circular and interconnected way. At first, four members of our research team, L.H., S.I., C.M., and A.K. spent time together discussing the retreat itself, our understandings of the activities, and our initial reflections on the transcripts. Throughout this first phase, we were intentional about self-location (Peltier et al., 2019), taking time to bring together our diverse perspectives as a way of building trust, self-reflexivity, and connection. We met often to discuss our perspectives and newfound interpretations and to validate our emerging understandings. It is important to note that we four did not attend the retreat and so recognized the need to expand our circle. In the second phase, we incorporated a peer researcher's analysis of the sharing circles. Our intention was to give primacy to her interpretation, recognizing that our colleague's own experience aligns more closely with the women at the retreat. This analysis served as a guidebook to help define key concepts and as a lens through which to critically examine our own analyses and find alignment. Finally, expanding the circle further, we included Elder Sandy-Leo, who was present at the retreat and who was able to offer important feedback, correction, and validation. From an Indigenous perspective, the Western need to compartmentalize and articulate, in a hierarchical way, the contributions that inform any research text (Caine et al., 2013) is problematic. Instead, for us, the relational approach to analysis and writing means honoring everyone as authors who contributed to the construction of the ideas, approaches, and stories of this article. Our weaving of the basket that this research text embodies brought us together in relationship as we passed on stories and teachings, engaged in conversations related and tangential, and shared in laughter, just as it is with the practice of weaving literal baskets among the Coast Salish.
“Singing for One Another”: Retelling the Stories of the Retreat
The process of translating lived stories to written stories is fraught with tension. We resonate with Clandinin's (2013) reminder that, in composing research texts, “there is no final telling, no final story, and no one singular story we can tell” (p. 205). We enter the circle of authorship that existed before our participation and find ourselves faced with retelling only segments of the stories from the AoW retreat that, as they are woven together, become something wholly new. We also become relationally entangled in this process (Clandinin & Connelly, 1990) and wonder about how we might craft this new story in a good way, honoring the messages the women intended to tell. The women's sharing is represented throughout this work in a style that we first discovered in the work of Young et al. (2015), in which the authors compose “word images.” Our adaptation of this method for representing data is meant to convey the meaning of what the women say in a manner that is more closely aligned with the cadence and pacing of speaking.
We also wonder about how this new story that is forming may contribute to other conversations about people with lived and living experience with HIV/HCV and of their resilience and wellness. This section–the analysis of the data–is where the basket takes shape. Leaning into the image of the Coast Salish basket weavers, who share stories and songs together as they work, as we engaged in conversational methods, we heard three distinct melodies forming: connection, disconnection, and reconnection. We hope that our singing (analysis) may join the healing song Elder Pearl speaks of in the closing circle:
I don't know why, what prompted me,
one day, compared to the day before,
what prompted me to get clean and sober.
I can give you all kinds of reasons, but really, they were no different than reasons I had the day before.
I believe that
somebody was singing for me, or
somebody was praying for me.
And I can't sing this song, ever, without thinking, we got sisters…
We've got sisters on the streets.
We've got some old lady isolated in a home, maybe she's suffering.
We've got people that are self-medicating right now.
Come on, let our voices carry this song.
So, when we're singing for ourselves, we're singing for one another…
We're singing for all of them we don't even know. (Elder Pearl, Sharing Circle, March 26, 2017)
Stories that expressed the healing power of connection emerged as the women spoke about the friendships they made during the retreat. They were becoming “spiritual friends” who were able to help interpret one another's lived experiences and who offered resonance. Stories were shared of the ghetto-like settings the women inhabited in the DTES; one woman offered a pungent reminder of a common DTES experience where you “smell the pain” (Grace, Sharing Circle, March 26, 2017). Memories of addiction and its disconnecting effects were disclosed, which one woman expressed with vivid detail, saying,
it's like being a shell and
I remember feeling
being down there,
it's like nothing's alive. (Grace, Sharing Circle, March 26, 2017)
These challenging verbalizations of lived intergenerational colonial reverberations (Young et al., 2015) surfaced in the safety of connection with newfound spiritual friends. The previously internalized, buried, and misunderstood stories were met with focused silence and listening that offered the storytellers a quiet and gentle healing presence.
Spaces where spiritual friendships may emerge are rare and often absent in the women's experiences in the DTES and within Western health care. The Western system's disconnected approach that divides the physiological from the mental, social, and spiritual fosters mistrust for Indigenous people. In contrast, during the AoW retreat, the women experienced a newfound flourishing of trust as they encountered Indigenous ways of approaching health and wellness that were founded on making relationships that began with following good protocols. One of the Elders described the process this way, saying,
It's very important that we respect others' speaking, don't talk when other people are speaking…and I guess,
to have trust and faith that our ways are trustworthy and reliable…
I know that we're capable of dealing with our own process and coming out the other side. We can do it.
We've been doing it since the beginning of time…That's a good teaching for all of us. (Elder Pearl, Sharing Circle, March 24, 2017)
Protocols of introduction were followed at the outset of the gathering. “We have been doing it since the beginning of time,” said Elder Pearl who spoke about how the act of sharing stories is simultaneously a reconnection with oneself and an invitation to connect with others around the circle. The practice of storytelling in a circle gives power and opportunity for each to tell their lived stories in turn. This approach cultivated a listening spirit (Closing circle, March 26, 2017) in which the women were learning to respect others' voices. The protocol of introduction, when facilitated by Elders/Knowledge Holders, provides a culturally safe space where one may find connection and reciprocity in their giving and receiving of their stories (Keira, written personal communication, February 1, 2021). Several women indicated that they felt as if they were destined for the spiritual connections they made with one another, such as Tara, who expressed,
Having that sense of openness is going to create security for me,
so that I'm able to
come out and
step out of myself and
grow in a good way and maybe
encourage my neighbor to do the same. (Tara, Sharing Circle, March 24, 2017)
Creating safe spaces was an important component of the retreat; the women shared pleasantries in the kitchen, enjoyed chatting in the hot tub, and even gathered for a spontaneous musical event when one of the participants, inspired by the safety she felt and with a spirit of remembering, played the piano on site while the other women listened (Keira, written personal communication, February 1, 2021). These examples are contrasted with the spiritual restrictedness that the women experienced in Western health care where, by necessity, they felt “guarded” and, as Savannah explains it, “makes spirituality hard, in a lot of ways” (Savannah, Sharing Circle, March 24, 2017). The war zone–like (Keira, written personal communication, February 10, 2021) context of the DTES and the focus on survival many of these women live, day in and day out, restricts the flourishing of their spirituality and connectedness to one another. It was clear from the conversations that a connection with spirituality is intuitive, as “your spirit knows exactly what you need” (Grace, Sharing Circle, March 24, 2017) and provides a direct link to connect with culture through ceremony, which one of the Elders described as a way of shaking loose the trauma:
Our Healers would do things;
there's the cedar brushing
there's the water there's
the eagle fan
there's the smudge
All that clears energy And as that energy clears,
it's not locked in your body as trauma. (Elder Sylvia, Sharing Circle, March 24, 2017)
Ava responded, after experiencing the Blanketing Ceremony.
I got the feeling the energy
the room changed
the energy field changed
I saw all the buffalo's ancestors
coming through the room
and just empowering
to every woman in that room
So every time a woman is blanketed
and when an Elder witnessed
it was just like I was blanketed by so many generations of healing. (Ava, Sharing Circle, March 24, 2017)
What Ava is also highlighting is that participation in ceremony may function as a grounding experience for those so caught up in the disconnecting inner-city “ghettos” in which they live–like the DTES; these are among Canada's poorest neighborhoods, rife with poverty and strife (Keira, written personal communication, February 10, 2021). Elder Sylvia told of the importance of paying attention to the teachings afforded by being on the land, “being by the water” and “being near trees” and experiencing the “calmness and that good feeling that comes from the land” (Elder Sylvia, Sharing Circle, March 26, 2017). Elder Rose reminded us that connecting with the land need not be done only through formal ceremony but by “simply going out and harvesting cedar branches… going down to the water and being in a canoe and paddling,” and “experiencing the land” as it is (Elder Rose, Sharing Circle, March 25, 2017). These stories reveal that land-based retreats like the AoW provide a safe space for connecting to the land, to the ancestors, to culture, and to spirituality. Pamela confirms, saying,
I feel more relaxed here
We've got trees
We've got our Mother Nature close by
It makes learning a lot easier. (Pamela, Sharing Circle, March 26, 2017)
Settler-colonialism in Canada is a system adept at taking and holding land for settler-collectives and normalizing systemic discrimination by attempting to submerge Indigenous issues, framing them as particular and peculiar to Indigenous people (Snelgrove et al., 2014). For Indigenous people, Western society represents an extension of the settler-colonial system that influences Indigenous–Western relations. Eurocentric thinking has given birth to the idea of institutionalized monoculture (Ermine, 2007), which has been made manifest through sociopolitical structures in Canada such as the residential school system, state policies that imposed interpretations of treaties on Indigenous people, and, of course, an approach to health care and access (Zambas & Wright, 2016). These are not only non-Indigenous systems but, for Indigenous people who navigate them, their image is re-created by the colonial gaze (Ermine, 2007) along with their narratives of health. Colonized systems perpetuate colonial logic, stifling the Indigenous imaginative and sustaining the deficit-framed vernacular of health care providers in relation to Indigenous people. Tara explains their experiences navigating a settler-colonial system, highlighting the emotional and social costs:
It's so challenging
because I see my friends' stories
and they're hiding
because of the stigma
and the ignorance
that's come to the health care system. (Tara, Sharing Circle, March 24, 2017)
Victoria describes her experiences with health care providers and the feeling of being reduced in a Western story of health that ignores her colonial experience:
I'd like them to see me
just for who I am
I'd like them to see me
as an equal, if anything,
somebody that they can learn from. (Victoria, Sharing Circle, March 24, 2017)
Her words resound with a call to be re-storied in a way that honors the sovereignty of Indigenous people. Likewise, Jennifer reiterates,
I want to be heard,
I want them to hear my voice. And, I want to be a part of my health care.
I deserve to actually be a part of it,
because it's about me. (Jennifer, Sharing Circle, March 24, 2017)
The women at the retreat expressed a desire to be recognized and seen as Indigenous. Each of them shared stories that came together, echoing like many hands beating the drum together. One such story was shared by Grace:
my inner drum,
held me strong in what I knew to be true.
I think that's very important for all of us to know
our own truths,
and to not take on what a doctor or so-called professional may tell us.
Cause it's really easy to do when you're that sick
you're at their mercy
I just really pray that the medical community recognizes the medicine that
have given us. (Grace, Sharing Circle, March 24, 2017)
As we listened to the women's stories, we realized that they were speaking about their disconnections from Western health care as a symptom of colonialism. Their experiences with health care professionals further compounded those symptoms as the women spoke of the fear of judgment they often felt. It should be remembered that, for these women, sharing the painful stories they have lived, even in the safe space of the sharing circles, represented both a powerful opportunity for healing but also an unfamiliar, and therefore potentially unsafe, experience. Outside of this Indigenous-led space, how must it feel for an Indigenous woman to tell her stories to the representatives of the causes of that pain? We are reminded of Boler (1999), who reflects on the tension in storytelling, suggesting that “testimony is trauma's genre” (p. 167). She cautions that there are risks in reducing one's story to an “overly tidy package” (p. 177). This risk is taken time and again by the women who offer their medical histories to near anonymous health care professionals. Linda illuminates on this point:
Are people going to judge me?
Are people going to say anything if I see them out on the street?
Are they going to acknowledge me? (Linda, Sharing Circle, March 24, 2017)
We recognize the ways that judgments, whether directly expressed or reverberating through the colonial structures of Western health care, play a role in disconnecting Indigenous women with lived or living experience with HIV/HCV. Judgments received in health care spaces perpetuate disconnection and, according to Grace, are like an infection that spreads this colonial disease of reducing each other to component parts.
What makes me feel unsafe
is when someone, including myself,
doesn't see the spirit in someone. (Grace, Sharing Circle, March 24, 2017)
Indigeneity is conceptually a reengaging with and making visible Indigenous ways of knowing, being, and doing without wondering how to translate, interpret, or fit within the settler-colonial system. Rather, Indigeneity asserts decolonization and an unsettling of structures, such as health, that have been shaped by colonial thinking (Maaka & Fleras, 2009). Indigenous culture, philosophies, and practices provide a wealth of knowledge and guidance for wholistic healing and a conceptualization of wellness that encompasses the physical, mental, emotional, and spiritual aspects of life. Indigeneity, as the women expressed, represents a different starting point for Indigenous health and wellness that is parallel, self-determined, and sustainable (Poonwassie & Charter, 2001).
When asked to describe their wellness journeys in one word, the women described it as: complete, relaxed, sisterhood, learning, education, aware and calm, cleaned, and connected. We recognize that these words take on their full meanings in the context of an Indigenous community; the retreat's structure and setting offering a vision of what that looks like and a needed escape for these women, whose lives are so shaped by the colonized and colonizing structures of the DTES. Coming together, sharing, and connecting demonstrated the communal practice of resilience-building and formed a foundational element of the women's healing. Dana speaks of her experience at the retreat saying,
We all come from different walks of life,
but we all have one thing in common…
And I think we're very strong,
as a whole,
strong. (Dana, Sharing Circle, March 26, 2017)
Colonization has created the conditions for disconnections from community-sustained traditional healing practices and land-based activities. A Western conceptualization of resilience is often defined by individual traits such as optimism, cognitive flexibility, and the ability to do well despite hardships, adaptivity, active coping skills, problem-solving ability, and social skills (Iacoviello & Charney, 2014; Iarocci et al., 2008; Kirmayer et al., 2011). We recognize in the women's sharing that Indigenous people's resilience is supported by their distinct cultural and traditional knowledge, connecting an individual to a greater community, environment, history, traditions, and language (Everyone Equal, 2020; Kirmayer et al., 2011). Victoria explains how cultural and community connectedness played a role in her healing and wellness:
I fled family violence,
many times in the middle of the night,
with my kids,
and I always had a place to go.
There's sweat lodge grounds,
and you can just go there and be safe.
My daughter was six months old,
she's (x age) now,
when I first went on that land and sat in that circle,
with our Cree relatives, our Métis relatives.
Many of us don't have a voice until they're here.
we're so strong,
we're so beautiful.
I've gotten so much from each person,
who's just been in this room. (Victoria, Sharing Circle, March 26, 2017)
In the following excerpt, as well, we hear one of the women describe how reconnecting to Indigenous ways and people has helped her voice her inherent resilience.
I've got a lot to offer,
we all have a lot to offer.
But when you're drinking and drugging,
you have nothing to offer.
All you feel is pain and sorrow, and
that's where I came from.
I don't want to go back there,
I'm determined not to go back there. (Linda, Sharing Circle, March 26, 2017)
For another woman, “knocking down the pillars of suffering and pain” was her way of articulating resilience by naming a structure of inequity, the colonial-pillars, that has supported a system wherein the colonized are bound in cycles of survival rather than flourishing. Western health care is often myopically caught up in perpetuating suffering and pain for those living with HIV/HCV by focusing the colonial gaze on symptoms instead of confronting the systems that that have been created by and for settlers. In contrast to the disconnection experienced in Western health care, one of the women offered a counterexample of the power of reconnection, citing the role Indigenous women with lived and living experience of HIV/HCV has played in her healing:
I started to get into joining retreats and gatherings,
not being alone,
living with this disease, and
being able to disclose in a good way, and
learning how to do it safely.
So, my wheel's been really a lot more balanced lately.
I'm not alone. (Jennifer, Sharing Circle, March 24, 2017)
The advantage of participating in retreats that include land-based activities, ceremony, and Indigenous approaches to data-gathering is the opportunity to practice resilience-making together. An Indigenous approach to research is ceremony (Wilson, 2008). This is not something named explicitly, but the collective, rather than individualistic, orientation of the various activities such as the sharing circles, as well as the informal spaces made available for the women to use, emphasizes not only “you are not alone” but draws connections to deeper cultural support systems that speak to the emotional, social, and spiritual aspects of wholeness and oneness. Through the retreat, the women grew together in relationship and demonstrated the power of resilience-making as they shared and as they listened (Keira, written personal communication, February 1, 2021).
Discussion: Filling the Basket
We have woven a basket and now wonder what it might carry. The process of weaving the stories into this article has, of course, reduced the complexities and depth of the whole retreat. However, it has also created something new that we hope is useful—a vessel that will carry different meaning for different readers. There are no generalizable implications or correct understandings of the future of Indigenous health and wellness to be found in the basket, but there are transferrable (Clandinin & Connelly, 1990) teachings that the women shared based on their experiences about Indigenous journeys of strength, resilience, and wellness. We conclude by thinking with the stories we have been weaving (Clandinin, 2013) and fill the basket with our thoughts and recommendations for doing research in a good way with Indigenous people who have lived and living experience of HIV/HCV.
Land-Based Indigenous Research
The land has played a fundamental role in grounding wellness journeys and expressions of resilience for Indigenous people and is viewed as a living, breathing, conscious being that heals and teaches (Krementz et al., 2018). Describing her experiences of being on the land at the AoW retreat, one woman remarked: “I heal more this way than I ever have in my life” (Grace, Sharing Circle, March 26, 2017). We celebrate with her and mourn for the ways her comment reveals the intergenerational effects of disconnection to the land. A move to inner-city environments for Indigenous people has further compounded the effects of disconnection to the land and created residential instability (King et al., 2009). The women find that they are placeless people, not at home in inner-city “ghettos,” and often unwelcome guests in their home of origin due to their perceived lifestyles (Keira, written personal communication, February 1, 2021).
The land provided a neutral space to perform ceremonies, connect with ancestors, and reawaken Indigenous wisdom. As such, the women at the retreat trusted the land to provide spiritual guidance. As Brenda shared her inspired understandings about land-based healing, she reflected that it can be cultivated even in the urban-enclosed environments of the DTES:
If I'm having a panic attack or I can't seem to get my head out of a depression
I'll go to the water
and I will just look at the lights on the water
I'll go out in the middle of the night
and just watch the lights of the city on the water.
And it brings me joy
it brings me hope.
The beautiful thing about the tide
it's twice a day,
all the time,
So, I know if I'm sick,
I'm gonna be well.
I can be sick,
but I'm gonna be well. (Brenda, Sharing Circle, March 24, 2017)
In an Indigenous paradigm, land plays a crucial role in reconnection with self and developing a sense of control and competency (Sinko et al., 2019), which are characteristic expressions of regaining sovereignty. Some women who had grown up on the land spoke about the activities that they had participated in and the tasks they had watched their family members practicing such as hunting, fishing, foraging, building, and maintaining homes and equipment. Rosemary shared about both her parents' active ways of living on the land, reflecting on the inherently wholistic world that was created for her:
They both worked,
as a trapper
my mom, she's a short woman,
but she picked up a big, broad axe, and made ties.
You see that train going by?
They put the rail over it.
She went out shooting,
and up picking berries,
we had our vegetable garden,
we had a root cellar,
we had it all.
I never knew what hunger meant till I left home. (Rosemary, Sharing Circle, March 24, 2017)
Rosemary experienced the way living on the land as a family and agency in one's own wellness was intertwined. The wealth of skills, wisdom, capacity, and self-reliance their families knew served as a source of abundant inspiration. Land-based retreats are reconnecting to ancestral and family stories and inspire a profound expression of togetherness and Indigeneity.
Indigenous Ceremony as Research
The women repeatedly expressed a desire to have regular access to culturally safe circles of support and guidance. Their experiences at the AoW retreat represented a reprieve from their daily fight to survive in the DTES and an access to ceremony and nature. One woman spoke of the importance of coming together, sharing stories, and spending time connecting with women through ceremony:
It shouldn't have to be a once-in-a-blue-moon special event…
Cause we are going to be going back to the city,
and there's lots of calamities,
and noise, and the busy life there again. A lot of things that will take us,
start challenging us with our peace of minds,
and our nurturing that we've been getting for the past few days. (Jennifer, Sharing Circle, March 26, 2017)
A lack of consistency in wellness programs for Indigenous women living with HIV/HCV was understood to be a barrier in their wellness journeys. These stories remind us about the ways that research fails to give back (Kovach, 2009), honor relationships, and provide healing experiences. It is clear to us that research with women living with HIV/HCV should align with the values of long-term relational connections that the women desire. Grace critiques her experiences with support networks that fail to demonstrate these kinds of commitments:
Those type of people,
not ones that are evolving to their next program,
they just donated what they needed to donate and then they leave
that's not the way,
it's supposed to be a connection
And connection meaning that,
making yourself available,
you open the door and then you disappear,
is not quite what I had in mind. (Grace, Sharing Circle, March 24, 2017)
Indigenous practices are grounded in the land, and the land is grounded in the people. Integrating ceremonies in research demonstrates a recognition of the importance of land and ceremony in Indigenous ways of being. In the eyes of Indigenous people, Western health care often disregards the spiritual component of wellness or, at best, it is imbued with the foreign and colonizing approaches of Western spirituality, shaped by those who have been an integral part of the traumatizing of Indigenous people. Time after time, Indigenous people have demonstrated that land-based ceremonies are an integral part of who they are and, when bonded together, represent a decolonizing practice.
Reconciliatory Approaches to HIV/HCV Care
Finally, we consider the insights offered by the women and how they relate to resilience, healing, and wellness for those living with HIV/HCV. In the eyes of Indigenous people, HCV has been conceptualized to be a colonial illness (Fayed et al., 2018), which we extend to include HIV, considering the probability of HIV/HCV coinfections. Likewise, it should not surprise that Western health care, which we have argued represents colonialism for Indigenous people, further wounds and traumatizes. Health care, having deconstructed wellness into component parts, has erected boundaries around the health component and restricted Indigenous access to care resources and professionals due to identity-based judgments and racism. This, we argue, facilitates and perpetuates a structure of colonial dependency. The experience of engaging with Western health care is, as the women describe, disconnecting from their Indigenous identities and wellness journeys. HIV/HCV care that remains tethered to health rather than open to an Indigenous approach to wholistic wellness reduces the journey of healing to an entrapment within a cycle of dependency on a colonial structure that simply treats physical symptoms.
Thinking with the women's stories, we are envisioning recommendations for a system of HIV/HCV care that is bundled together in a wholistic approach to healing that incorporates physical, mental, emotional, and spiritual components of a person's life in community. As much as the AoW retreat provided a model for Indigenous-led, culturally safe, and land-based research, it was, at the same time, a model for and an Indigenous approach to HIV/HCV care. It was not an indigenized Western model, which does not fundamentally change the Indigenous experience of navigating a colonial system. Instead, the women speak of the retreat as a space to connect with peers for collective healing and to reconnect with their Indigeneity—an experience altogether foreign within the confines of Western health care services. Employing etuaptmumk (a Two-eyed Seeing approach), we wonder with the women about how to include the elements of Western HIV/HCV care within Indigenous models like the AoW retreat that are untethered from the imposed colonial boundaries. Further research into such a model must also lead to programmatic research that results in sustained service delivery, not only being Indigenous-led and -centered but also specific to Indigenous women and grounded in relevant lived experience and surrounded by the wisdom from our Ancestors, transmitted through Elders and Knowledge Holders. This decolonizing approach will advance reconciliatory approaches to HIV/HCV care in ways we have yet to explore.
Alexandra King reports receiving consultancies/honoraria from pharma (AbbVie and Gilead). Sandy Leo Laframboise reports receiving honoraria from Pewaseskwan (the Indigenous Wellness Research Group). Luke Heidebrecht, Subhashini Iyer, and Claudia Madampage report no financial interests or potential conflicts of interest.
This study was funded by Canadian Institute of Health Research (CIHR; Grant #371496; PI: A. King)
L.H. contributed to this article by conceptualizing, designing methodology, performing data analysis, project administration, writing, reviewing, and editing. S.I. contributed to this article by curating and analyzing data, designing methodology, managing resources, visualization, writing, reviewing, and editing. S.L.L. contributed to this article by conducting research and data analysis, providing resources, supervision, validation, writing, and reviewing. C.M. contributed to this article by analyzing data, writing, reviewing, and editing. A.K. contributed to this article by conceptualizing, acquiring funds for the retreat, conducting the research, providing guidance and validation, reviewing, and editing.
- My inner drum held me strong in what I knew to be true—Indigenous women, in the Downtown Eastside (Vancouver), are strong and resilient.
- I just really pray that the medical community recognizes the medicine that our Elders, our Ancestors, have given us—Settler-colonialism is a root cause of many structural, social, and health inequities experienced by Indigenous people; Indigenous women have been particularly disadvantaged by the hegemonic, patriarchal constructs that settler-colonialism creates and reinforces.
- It shouldn't have to be a once-in-a-blue-moon special event—Health, healing, and wellness systems for Indigenous women must respect their sovereignty and structurally sustain culturally safe and reaffirming land- and culture-based healing and wellness.
- Any Aboriginal-type event is welcoming and adjusting for everyone, and that is a gift in itself—Wellness research with Indigenous women requires decolonial and Indigenous approaches and methodologies that privilege relevant Indigenous ways of knowing, being, and doing.
- Our protocols are good, they're safe—Wellness research should include ceremonial research, which is a valid Indigenous research methodology, as well as having therapeutic value.
- Every one of us is a strand in that basket—Connection and reconnection, with oneself, with each other, with culture, and with Mother Earth are among the best medicines against the intergenerational, intersectional disconnection imposed by settler-colonialism.