“Every One of Us Is a Strand in That Basket” Weaving Together Stories of Indigenous Wellness and Resilience From the Perspective of Those With Lived and Living Experience With HIV/Hepatitis C Virus

Abstract

This article primarily focuses on the stories shared by Indigenous women with living and/or lived experiences of HIV/hepatitis C virus from the Vancouver Downtown East Side who attended the "Awakening our Wisdom" retreat. Weaving together the story of an Indigenous approach to research that informed the design of the retreat and the findings that emerged, a basket is formed that highlights the ways settler-colonialism within Canada has produced a system of health care that has neglected the Indigenous experience. The emerging themes of Connection, Disconnection, and Reconnection offers teachings for Indigenous journeys of resilience and wellness for those living with HIV/hepatitis C virus. These findings may help health care practitioners identify health care places and spaces that are in need of decolonization and offer, from an Indigenous perspective, the next steps forward for a health care system that promotes Indigenous engagement and retention in care.

Full text

Research Article
“Every One of Us Is a Strand in That Basket”: Weaving
Together Stories of Indigenous Wellness and
Resilience From the Perspective of Those With Lived
and Living Experience With HIV/Hepatitis C Virus
Luke Heidebrecht, PhD Candidate* • Subhashini Iyer, MSc, MPH • Sandy Leo Laframboise •
Claudia Madampage, PhD, MPH • Alexandra King, MD, FRCPC
Abstract
This article primarily focuses on the stories shared by Indigenous women with living and/or lived experiences of HIV/hepatitis C virus from the
Vancouver Downtown East Side who attended the “Awakening our Wisdom” retreat. Weaving together the story of an Indigenous approach to
research that informed the design of the retreat and the findings that emerged, a basket is formed that highlights the ways settler-colonialism
within Canada has produced a system of health care that has neglected the Indigenous experience. The emerging themes of Connection,
Disconnection, and Reconnection offers teachings for Indigenous journeys of resilience and wellness for those living with HIV/hepatitis C virus.
These findings may help health care practitioners identify health care places and spaces that are in need of decolonization and offer, from an
Indigenous perspective, the next steps forward for a health care system that promotes Indigenous engagement and retention in care.
Key words: decolonization, healing, HIV/HCV, indigenous methodologies, land-based research, resilience, wellness
“Any Aboriginal Type Event…Is a Gift in
Itself”: Situating the Research
Since I was 15,
I always had to do everything
for myself
including learning.
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 some-
thing 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.”Victoriaand13otherwomen
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’sNetwork,
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’sNetworkandRed
Road HIV/AIDS Network organized AoW to provide
healing and wellness opportunities with a harm re-
duction approach for Indigenous women living with or
at risk of HIV and/or HCV (Keira, written personal
communication, February 1, 2021). AoW was pio-
neering because it brought together the HIV and HCV
communities that had previously operated quite sep-
arately. This was in response to the federal govern-
ment’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
Sponsorships or competing interests that may be relevant to content are disclosed at
the end of this article.
Luke Heidebrecht, PhD Candidate, is a Research Associate, College of Medicine,
University of Saskatchewan, Saskatoon, Saskatchewan, Canada. Subhashini Iyer,
MSc, MPH, is a Research Associate, College of Medicine, University of
Saskatchewan, Saskatoon, Saskatchewan, Canada. Sandy Leo Laframboise, is a
M´etis Two Spirit Elder, Vancouver, British Colu mbia, Canada. Claudia Madampage,
PhD, MPH, is a Project Officer, College of Medicine, University of Saskatchewan,
Saskatoon, Saskatchewan, Canada. Alexandra King, MD, FRCPC, from Nipissing
First Nation, is the Cameco Chair in Indigenous Health and Wellness, College of
Medicine, University of Saskatchewan, Saskatoon, Saskatchewan, Canada.
*Corresponding author: Luke Heidebrecht, e-mail: heidebrecht.luke@usask.ca
Copyright ©2021 The Authors. This is an open-access article distributed under the
terms of the Creative Commons Attribution-Non Commercial-No Derivatives
License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work
provided it is properly cited. The work cannot be changed in any way or used
commercially without permission from the journal.
http://dx.doi.org/10.1097/JNC.0000000000000285
Journal of the Association of Nurses in AIDS Care March-April 2022 •Volume 33 •Number 2 189

word that means “the sky is starting to clear”or “the
weatherisimproving”and speaks to the research ap-
proach 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 Re-
search 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 com-
munication, 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 inter-
twined or, as Grace so eloquently reflected on her ex-
perience 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 bas-
kets, whether it be sweet grass, a M´
etis 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 pro-
vides 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 in-
equities experienced by First Nations, Inuit, and M´
etis in
Canada must be framed within the context of coloniza-
tion, 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 in-
tergenerational narrative reverberations (Young, 2005)
that include “the loss of language, traditional cultural
knowledge, and spiritual and relational practices, par-
ticularly family relationships”(Young et al., 2015).
These are also at the root for increased burden of various
STBBIs, including HIV, HCV, and HIV/HCV coin-
fection (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 cul-
tures (Snelgrove et al., 2014). This disconnection, com-
bined 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’setuaptmumk–Two-eyed Seeing
(Martin, 2012; Peltier et al., 2019) was used as a con-
ceptual framework that shaped the various components
of our research. For this project, it meant bringing to-
gether both Western and Indigenous ways of un-
derstanding 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 In-
digenous people comprised 4.9% of the Canadian pop-
ulation, 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),
190 March-April 2022 •Volume 33 •Number 2 Heidebrecht et al.

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 In-
digenous while only accounting for 6% of the general
population (BC Centre for Disease Control, 2019). Al-
though 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 dis-
crimination 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 na-
tional authorities and institutions and continues to foster
Indigenous peoples’mistrust of health care services spe-
cifically (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, emo-
tional, 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 ex-
perience of national institutions and failed to offer who-
listic 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 connec-
tions 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 cri-
tiquing the potential colonizing impacts of Western re-
search. 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 ar-
ticle concludes that the insights gained provide us a min-
imal view of how to identify the health care places and
spaces that require reconceptualization, decolonization,
and gender-specific Indigenous approaches.
Methods
“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,
rewarding,
empowering,
amazing,
energizing.
Reconnection.
Clarification.
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 ap-
proaches used in data gathering as meaningful, as ex-
emplified in her choice of words to describe her
experience. We recognize the central role that relation-
ships 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 experi-
ences 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
Journal of the Association of Nurses in AIDS Care Every One of Us Is a Strand in That Basket 191

validation and example of how research done with In-
digenous 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 em-
phasize 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 cere-
monies and the land (Keira, written personal communica-
tion, 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, pro-
vided 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. Sequen-
tial 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 El-
der, who explained the importance of traditional cere-
monies and their significance in the journey of healing.
We can trust that we will be fine,
spiritually,
emotionally,
mentally and
physically,
following our protocols.
Our protocols are good,
they’re safe. (Elder Pearl, March 24, 2017)
These words reverberate with Wilson’s (2008) expla-
nation that Indigenous research is ceremony; it is most
important that they note the role that Indigenous episte-
mology and ontology play in supporting Indigenous par-
ticipants 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 im-
portance of informal activities to support building rela-
tionships and of providing outdoor activities for the
women to find healing in nature. Weaving informality
with formality expressed a particularly Indigenous ap-
proach 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 tradi-
tions, 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 commu-
nity 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 con-
nection, 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: In-
digenous 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 pro-
cess of analysis and writing took time and proceeded in a
circular way. Circularity rather than linearity reflects the
192 March-April 2022 •Volume 33 •Number 2 Heidebrecht et al.

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 re-
search team, L.H., S.I., C.M., and A.K. spent time to-
gether discussing the retreat itself, our understandings of
the activities, and our initial reflections on the tran-
scripts. 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 inter-
pretations 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 col-
league’s own experience aligns more closely with the
women at the retreat. This analysis served as a guide-
book 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 in-
cluded Elder Sandy-Leo, who was present at the retreat
and who was able to offer important feedback, correc-
tion, 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 conversa-
tions 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 sin-
gular 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 repre-
sented throughout this work in a style that we first dis-
covered 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 wea-
vers, who share stories and songs together as they work,
as we engaged in conversational methods, we heard
three distinct melodies forming: connection, disconnec-
tion, 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)
Connection
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
Journal of the Association of Nurses in AIDS Care Every One of Us Is a Strand in That Basket 193

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 mean
I remember feeling
being down there,
it’s like nothing’s alive. (Grace, Sharing Circle, March 26,
2017)
These challenging verbalizations of lived in-
tergenerational colonial reverberations (Young et al.,
2015) surfaced in the safety of connection with new-
found spiritual friends. The previously internalized,
buried, and misunderstood stories were met with fo-
cused 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 Indigenousways 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,
March26,2017)inwhichthewomenwerelearningto
respect others’voices. The protocol of introduction, when
facilitated by Elders/Knowledge Holders, provides a cul-
turally 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
theotherwomenlistened(Keira,writtenpersonal
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 ex-
plains 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 in-
tuitive, 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;
the dancing
drumming
the rattle
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.
194 March-April 2022 •Volume 33 •Number 2 Heidebrecht et al.

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
just going
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). El-
der Sylvia told of the importance of paying attention to the
teachings afforded by being on the land, “beingbythe
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 an-
cestors, 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)
Disconnection
Settler-colonialism in Canada is a system adept at taking
and holding land for settler-collectives and normalizing
systemic discrimination by attempting to submerge In-
digenous issues, framing them as particular and peculiar
to Indigenous people (Snelgrove et al., 2014). For In-
digenous people, Western society represents an exten-
sion 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 ap-
proach 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
and burdening,
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
a truthful,
strong,
intelligent
human being.
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. Like-
wise, 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:
Journal of the Association of Nurses in AIDS Care Every One of Us Is a Strand in That Basket 195

My teachings,
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
our Elders,
our Ancestors,
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 com-
pounded 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 re-
ducing 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 di-
rectly expressed or reverberating through the colonial
structures of Western health care, play a role in dis-
connecting Indigenous women with lived or living ex-
perience 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)
Reconnection
Indigeneity is conceptually a reengaging with and mak-
ing visible Indigenous ways of knowing, being, and do-
ing 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 knowl-
edge and guidance for wholistic healing and a concep-
tualization of wellness that encompasses the physical,
mental, emotional, and spiritual aspects of life. Indige-
neity, 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 In-
digenous 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. Com-
ing 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…
we’re sisters.
And I think we’re very strong,
as a whole,
like sisterhood,
standing together,
strong. (Dana, Sharing Circle, March 26, 2017)
Colonization has created the conditions for discon-
nections from community-sustained traditional healing
practices and land-based activities. A Western concep-
tualization 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; Kir-
mayer 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,
196 March-April 2022 •Volume 33 •Number 2 Heidebrecht et al.

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 teepee,
there’s berries
and fruit
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 M´
etis relatives.
Many of us don’t have a voice until they’re here.
But collectively,
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 discon-
nection 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 in-
clude 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 in-
formal 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 demon-
strated the power of resilience-making as they shared
andastheylistened(Keira,writtenpersonalcommu-
nication, 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 dif-
ferent meaning for different readers. There are no gener-
alizable implications or correct understandings of the
future of Indigenous health and wellness to befound in the
basket, but there are transferrable (Clandinin & Con-
nelly, 1990) teachings that the women shared based on
their experiences about Indigenous journeys of strength,
resilien ce, and wellness. We conclude by thinkin g 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 In-
digenous 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
Journal of the Association of Nurses in AIDS Care Every One of Us Is a Strand in That Basket 197

at the AoW retreat, one woman remarked: “Ihealmore
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 in-
tergenerational 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,”andoftenun-
welcome guests in their home of origin due to their
perceived lifestyles (Keira, written personal communi-
cation,February1,2021).
The land provided a neutral space to perform cere-
monies, connect with ancestors, and reawaken In-
digenous 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,
never stops.
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 charac-
teristic 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 inter-
twined. The wealth of skills, wisdom, capacity, and self-
reliance their families knew served as a source of
abundant inspiration. Land-based retreats are recon-
necting 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 re-
prieve 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 In-
digenous 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 heal-
ing 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,
consistently,
not ones that are evolving to their next program,
198 March-April 2022 •Volume 33 •Number 2 Heidebrecht et al.

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,
reconnecting,
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 ap-
proaches of Western spirituality, shaped by those who
have been an integral part of the traumatizing of In-
digenous 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 In-
digenous 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 profes-
sionals 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 In-
digenous 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 recon-
nect with their Indigeneity—an experience altogether
foreign within the confines of Western health care ser-
vices. Employing etuaptmumk (a Two-eyed Seeing ap-
proach), 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. Fur-
ther research into such a model must also lead to pro-
grammatic 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.
Disclosure
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 Clau-
dia Madampage report no financial interests or potential
conflicts of interest.
Funding
This study was funded by Canadian Institute of Health
Research (CIHR; Grant #371496; PI: A. King)
Author Contributions
L.H. contributed to this article by conceptualizing,
designing methodology, performing data analysis,
project administration, writing, reviewing, and edit-
ing. S.I. contributed to this article by curating and
analyzing data, designing methodology, managing
resources, visualization, writing, reviewing, and edit-
ing. S.L.L. contributed to this article by conducting
Journal of the Association of Nurses in AIDS Care Every One of Us Is a Strand in That Basket 199

research and data analysis, providing resources, su-
pervision, 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 val-
idation, reviewing, and editing.
Acknowledgments
The quote that is the title is taken verbatim from a story
shared by one of the women at the Awakening our
Wisdom retreat. The authors believe her words speak to
the essence of this article that weaves together the many
stories that were documented. The authors offer their
sincere gratitude for all the women and the Elders who
gathered and who offered their stories. The authors
approached their writing as entering into ceremony and
recognize their relationships do not end with the publishing
of this piece. The authors would also like to thank Peer
Researcher Kristin Dunn for her insights and analysis,
Ruth Smith for meticulous transcriptions, and Jessica
Bright and Ashley Henry for their contributions in research
planning, data gathering, and supporting the retreat. The
authors are also grateful to those who organized and
facilitated the retreat.
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Key Considerations
mMy inner drum held me strong in what I knew to be
true—Indigenous women, in the Downtown Eastside
(Vancouver), are strong and resilient.
mI 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.
mIt 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.
mAny 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.
mOur 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.
mEvery 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.
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