*** Aboriginal and Torres Strait Islander readers are advised this article includes names and images of people who have passed, published with permission of families ***
Introduction by Croakey: Members of the the Aboriginal Kidney Care Together – Improving outcomes Now (AKCTION) program at the University of Adelaide generously share their stories below, about the importance of spirituality and the cultural determinants of health, and the benefits of decolonising healthcare and research.
“We want to invite everyone to take part in acknowledging and Caring for your Spirit from the perspective of Australian First Nations Peoples, to reimagine a healthcare system that embeds a holistic approach to health, including caring for a person’s Spirit,” they write below.
Kynesha Temple, Rhanee Lester, Nari Sinclair and Kelli Owen write:
This story is dedicated to our AKction2 kidney warriors Inawinytji Williamson and Nari Sinclair who joined their Ancestors in 2023, on whose shoulders we stand to disrupt systems of racism. AKction2 has permission and encouragement from families to use their images and names to continue building legacies for equity and access in kidney care and keeping our people off the machines in the first place.
The Aboriginal Kidney Care Together – Improving Outcomes Now (AKction2) Reference Team (A2RT) are Australian First Nations Peoples who have lived experience of chronic kidney disease, dialysis treatments, are awaiting kidney transplants, or have received a kidney transplant. Interwoven around the A2RT, are 4 sub-studies that make up the AKction2 research project: Indigenous Governance, Peer Support, Health Journey Mapping, and Cultural Safety in kidney care.
These four studies are managed by the AKction Project Team (APT), staff employed by the University of Adelaide to carry out and coordinate the project, and postgraduate/undergraduate students undertaking A2RT-directed research. We work together as a team of Indigenous researchers with our non-Indigenous allies, on the shared aim of decolonising kidney care and increasing culturally safe practice.
We share our skills and knowledge in our quest to prioritise principles of culturally and clinically safer treatment and care for Aboriginal kidney patients and family members and their communities.
Aboriginal and Torres Strait Islander Nations are a deeply spiritual and relational peoples, with a knowledge database stretching beyond 60,000 years. We acknowledge the wisdom and contributions of Elders and Ancestors, including A2RT members who have passed away. When unplanned situations create successful outcomes, we say “It is the Ancestors,” as we believe in this universal energy drawing us together to make a difference.
Spirit is described differently by Australian First Nations Peoples across this vast landscape and throughout this article we share our stories and knowledge around the cultural practices we use to grow and nurture our spiritual strength on our health journeys.
In AKction2, we work together with the aim to decolonise the spaces we live and work in by using our own Australian First Nations languages. We describe our decolonising process as our “Aboriginal ways of knowing, being and doing”. We use our own first languages in this article, to help us articulate our First Nations concepts and perspectives, in contrast to the dominant Australian Eurocentric worldviews.
The spiritual essence of a person or the Wannapi, as Adnyamathanha People describe, is the term used for spirit. Ngarrindjeri People describe the human spirit as Miwi – the sense of oneself. The Miwi is located behind the stomach and is closely translated to ‘soul substance,’ as the source of emotions, as an eternal part of humans where all important feelings, experiences and thoughts are expressed. The Kaurna word for spirit is Tuwila. These concepts are linked back to the spiritual, emotional, physical, and mental aspects of oneself.
Nurturing and teaching our spirit to be strong and healthy helps to support our emotional, physical, and mental health, enabling us to be resilient and courageous on our health and wellbeing journeys as we live, work, and walk together on Yarta (Adnyamathanha and Kaurna) or Ruwi (Ngarrindjeri). Our connections to culture, family, and Yarta/Ruwi, are a priority for our overall health and wellbeing, and are central to solidifying our sense of identity of who we are and how we carry ourselves through life using an holistic approach.
The health of our Spirit impacts every aspect of our lives, including our mind/mental (brain), feelings/emotions (heart) and physical/senses (body).
Australian First Nations Peoples who use cultural knowledge and practices in health, research, and medical spaces gain strength and protection from the Ancestors and our Creator, which helps to centre the Kidney Warriors Wannapi/Miwi/Tuwila as they manage their kidney disease and navigate the health system.
Connection to Country
A key factor in keeping one’s Wannapi/Miwi/Tuwila strong is by staying connected to Yarta/Ruwi, the Adnyamathanha, Kaurna, and Ngarrindjeri words for Country.
This quote by Mick Dodson beautifully explains:
For us, country is a word for all the values, places, resources, stories and cultural obligations associated with that area and its features. It describes the entirety of our ancestral domains.
All of it is important – we have no wilderness, nor the opposite of wilderness, nor anything in between. Country is country – the whole cosmos.
Country underpins and gives meaning to our creation beliefs – the stories of creation form the basis of our laws and explain the origins of the natural world to us – all things natural can be explained.”
Many Australian First Nations Peoples must leave their Yarta/Ruwi when their life, health and wellbeing are at risk. The decolonising methodologies within AKction2 assist us in staying connected to our way of knowing, being and doing.
For example, we have a standing item on meeting agendas called a Spirit check-in and check-out at the beginning and end. Through our spirit check we utilise the practice of Yarning to help us to feel comfortable to share and communicate within an academic space. This way of communicating helps us to show up, stand up, and speak up. To give us strength when we are trying to create culturally safe spaces within the medical and research spaces for our Mob.
Spirit checks provide a sense of each person’s spiritual, physical, and emotional health and well-being, creating a supportive and nurturing space for all to begin our meetings. This practice also helps us to remember how far our customs go back, as the oldest continuing cultures in the world. We gain strength in continuing our practices.
We have introduced a message stick to establish contemporary Indigenous Governance. The message stick was used by our Ancestors over thousands of years as a means of communicating between different Aboriginal Nations. It also reminds us to listen deeply to what is being shared by the person holding it. Dadirri is deep listening practices, and Ganma is the creation and merging of knowledge into new knowledge.
The message stick was gifted to AKction from NIKTT (National Indigenous Kidney Transplantation Taskforce) to collectively gather our stories and voices from around Australia and carry them back to Canberra to symbolically show the parliament the advocacy, voices and stories of our people struggling through their kidney journeys.
Cultural safety matters
Nari Sinclair was a Ngarrindjeri and Yorta Yorta woman from Raukkan in South Australia and Shepparton in Victoria. In her lifetime, Nari lobbied politicians, and continued to discuss the kidney journey through interviews on television, radio, and newspapers right up to her passing.
Nari was particularly interested in improving cultural safety across the kidney care journey for both rural and remote renal patients and carers. Nari’s lived experience led her to identify the gaps that were negatively impacting First Nations patients. Nari’s advocating for improvements to the system to address these gaps were a major inspiration for the AKction project. Nari was a co-founder of A2RT. This work was initiated through the conversations that Nari and Inawinytji were having about the amount of time waiting for transport and identifying the gaps that they both experienced within the health care systems, while receiving kidney care.
Nari advocated to improve Aboriginal and Torres Strait Islander Peoples’ experience of being on dialysis or having a kidney transplant. She wanted to improve the whole kidney journey for all people. Improvements in services such as: transport, accommodation, financial assistance, and cultural safety are urgent.
A pilot project was set up to provide dialysis at Kanggawodli (pronounced Ganga wodli, meaning ‘caring house’), an SA Health run Aboriginal medical hostel where patients and carers stay. There are now three dialysis chairs located at the hostel with wrap around timely services (a one stop shop) for patients (New dialysis chairs at Aboriginal health service – CALHN – Central Adelaide Local Health Network).
Nari also co-led the Reference Teams across both stage 1 and stage 2 of AKction from 2018 to 2023, as a Chief Investigator. Nari engaged in community consultations and educating nursing students and staff about cultural safety at the Nursing School, University of Adelaide. Furthermore, she generously shared her kidney story in the hope that real changes and improvements continue to happen, based on the gaps identified from her lived experience with kidney disease.
When yarning with Nari she talked about how she kept herself strong throughout the almost two decades of being on dialysis. She always saw her family as giving her strength. Nari felt that passing down culture to her Grandkids was what kept her spirit strong. Nari felt sharing knowledge with her Grandkids gave her a sense of purpose. This was important as there was a real sense of pride and responsibility to share her culture with younger generations. Nari expressed she wanted her family to grow up feeling they belonged and had a sense of identity as First Nations peoples.
Nari talked about how proud she was to take her Grandkids to Raukkan, an Aboriginal community in South Australia. Nari wanted to ensure her Grandkids could walk their Ruwi and know their heritage.
She and her partner Terry taught their Grandkids Ngarrindjeri language, which Terry continues to pass down along with knowledge of the Ngarrindjeri culture to the next generations of Ngarrindjeri leaders. This was an important way that Nari kept her spirit strong and when she did this, she felt like she was helping to create a more abundant future for her Mob.
Strong spirit
Rhanee Lester (researcher profile) is an Adnyamathanha woman from the Northern Flinders Ranges and Port Augusta in South Australia with over 18 years lived experience of kidney disease. She uses her experience of kidney disease, dialysis, and transplantation to help others navigate their own health journeys and is a Chief Investigator on AKction2 and a Peer Navigator at the Port Augusta Renal Unit.
The Peer Navigators role was created through the National Indigenous Kidney Transplantation Taskforce (NIKTT), as a way of providing support and advocacy from a lived experience peer perspective to other First Nations patients living with CKD.
Rhanee’s lived experience with CKD gives her a deep understanding of the struggles herself and other Australian First Nations peoples experience on their kidney journeys, making her (along with Nari and Kelli) unique experts in the Kidney space, or ‘Kidney Warriors’ as they frequently refer to themselves as.
Rhanee describes her Adnyamathanha culture as being intertwined with the natural environment, networks of people and their cultural beliefs. She identifies four main aspects in her life that have been deeply impacted her life journey as an Australian First Nations person living with chronic kidney disease: mental, physical, spiritual, and emotional health and wellbeing.
Rhanee expresses that she believes her ancestors are pulling her through this worldly journey and explains her trust in spirit and creator to help give her strength to process the ups and downs of life. As Rhanee stated, she would be “calling on her Ancestors to help her through her physical journey” which she identified as Dadirri, the practice of deep listening (similar to meditation).
Adnyamathanha creation stories highlight the important concepts of heaven or Wirkurtanha. Then there’s the term ‘Dreaming’ or ‘Dreamtime’. Dreaming was first used in Alice Springs in the late 19th century by Udnyu (Adnyamathanha word for ‘white man’) Francis Gillen, who was a post and telegraph stationmaster in Alice Springs who spoke Arrernte and was a keen ethnologist who ’dreamed up‘ the term in attempts to translate and explain the complex nature of the Arrernte word-concept Ülchurringa (“Alcheringa”; “Altyerrenge” or “Altyerr”), the name of Arrernte people’s system of religious belief.
In the Yura Ngawarla (‘Earth Language’ Adnyamathanha word for ‘oral language’) of the Adnyamathanha, there are two words that are used to describe this concept of ‘Dreaming’. Nguthuna is similar to the Dreaming Rhanee connects to during her journey through the health care system. The Dreaming acknowledges the many ancestral creation beings in which Rhanee connects to that give her strength.
This is Rhanee’s way of practising her culture and Mudha which encompasses the kinship systems, customs and lore. This practice helps give us strength and guide us through the journey. Rhanee believes that this is an important aspect of Indigenous cultures that need to be respected and appreciated as the cultural practices and spiritual beliefs of Australian First Nations peoples are often not considered or embedded into post-colonial structures and systems, especially in western healthcare systems.
For many Indigenous people the importance of our spirit is deeply sacred. Rhanee shares that the word for spirit in Adnyamathanha is Wannapi and it is important to protect, as it is for Ngarrindjeri people to protect their Miwi or Kaurna their Tuwila.
Allowing people to express their spiritual beliefs and cultural practices can be helpful to understand one’s journey and give one the strength to attend appointments and treatments, remain hopeful for a longer future and feel like we have a voice and are being heard.
Rhanee believes that spiritual life for Adnyamathanha peoples is not just the connection to Creator Arrawatanha (the Adnyamathanha word for ‘Most High’) but also the emotional and physical practice of having a relationship with our own Yarta (Adnyamathanha word for ‘Country’) through our Songlines and Creation Stories.
Rhanee’s aunty, Adnyamathanha Elder Aunty Rev Dr Denise Champion, who is also an A2RT member, explains, “that we always have this presence of our Ancestors in this country”, and writes beautifully in her book ‘Yarta Wandatha: The Land is Speaking, The People are Speaking’ about the deep connection between the Creation of Country, the People and the presence of Spirit.
Rhanee hopes that this article will not only highlight the important and deep connection that the Adnyamathanha people have with their culture and spirituality, but that it will also open a doorway of curiosity for healthcare workers nationwide to further explore and take an interest in the cultural beliefs of other Australian First Nations groups that are using their Aboriginal ways of being, doing and knowing to navigate, manage, survive and thrive in the healthcare systems that have been setup in their communities to support them.
We are proud to say that we have proven through our research in AKction2 that working in collaboration with Aboriginal and Torres Strait Islander people leading the way, brings the most successful results for our communities where our Kidney Warriors are the victors!
Cultural connections
Kelli Owen (researcher profile) is a Kaurna, Narungga and Ngarrindjeri woman of South Australia whose Country ranges from across the Adelaide plains up to the Yorke Peninsula and south to Cape Jervis.
Kelli is a Chief Investigator and member of AKction2. She is also the National Community Engagement Coordinator of the National Indigenous Kidney Transplantation Taskforce (NIKTT). Furthermore, Kelli is a member of the NIKTT Operations Committee. She also co-chairs the Community Engagement Working Group and is Project Officer with SA Health, that oversees the Kanggawodli renal project with Central Northern Adelaide Renal & Transplantation Service (CNARTS).
Kelli has lived experience with kidney disease and through her lived experiences, also identified that the needs of Australian First Nations peoples are not being met by post-colonial health systems.
Kelli had known since she was 19 years old about the deterioration of her kidney health and was living and working away interstate from her lakalinyeri (Ngarrindjeri for family) and Ruwi (Country) for 26 years. Whilst being away from Ruwi/Yarta she was given the news at 30 years young that she would soon need to receive kidney replacement therapy in the form of dialysis and made the decision to move back home to live in South Australia. Kelli’s hometown Murray Bridge is located on the land of the Ngarrindjeri people; however, Kelli had to travel a two-hour round trip to Adelaide, located on Kaurna Yarta to receive her dialysis treatment.
Kelli expressed that it was an experience of being spiritually pulled back home for her kidney care. Kelli felt that she was part of the community again as she was being recognised and included in important conversations. Being welcomed back by her Aunties had a significant impact on her feelings of belonging, because she was able to express herself through speaking her Ngarrindjeri language with her family. Kelli felt that this helped her to feel a strengthening of spirit and a connection to land, culture, and her ancestors. She felt it was her ancestors who called her back, which created a sense of belonging and deep emotional ties to being back on Country.
We keep our Wannapi/Miwi /Tuwila (Spirit) strong by visiting Yarta/Ruwi (our Country), stepping on our own land. Country is a place to reconnect to oneself while living in a post-colonial system. Country is a place of spiritual healing and is a way for Australian First Nations peoples to continue and in some cases revive the practice of cultural protocols. For Australian First Nations peoples, stepping on Country is like stepping in the footsteps of our Ancestors and continuing their legacy in a world that has tried to strip us of our culture and customs.
We also keep our Wannapi/Miwi/Tuwila strong by actively practising culture that strengthens our connection to self and to pay respect to the people that walked before us. Culture is a part of how one identifies oneself and gives meaning to how we place ourselves within the world.
Another way to keep us strong is by connecting to family and community. Australian First Nations kidney patients frequently feel worn out, frustrated and fearful for their own survival. This is as much a spiritual experience as it is physical, emotional, and mental.
Mainstream services and hospitals are, however, still learning how to approach Indigenous wellbeing in a culturally safe context, one that is free from systemic racism.
Invitation
Kynesha Temple is a Ngarrindjeri and Narungga woman who was raised on Kaurna Yarta and was a researcher with AKction. This article is a collaboration to highlight the strength and cultural perspective that keep Rhanee, Kelli and Nari strong on their kidney journeys.
Kynesha and Rhanee conceived the writing of this article together after a meeting where discussions turned to the ways that Spirit keep the A2T members strong in their spirit throughout their kidney journey, which can have a profound impact on Kidney Warriors. AKction members expressed wanting to talk more about mental health.
Kynesha and Rhanee had conversations about the ways having a strong sense of identity can help navigate life as our wellbeing can be understood differently within cultures. Kynesha and Rhanee wanted to express the culturally specific ways through a strengths-based approach, that also interweaves our languages and highlights important ways we feel connected to our Ancestors and Country, through our protocols.
These discussions among A2RT members highlighted the cultural responsibilities and the importance of spirituality for Kidney Warriors. This emphasis led Kynesha to focus on how A2RT members maintain strength throughout their kidney journeys, highlighting their individual experiences and connection to culture.
We want to invite everyone to take part in acknowledging and Caring for your Spirit from the perspective of Australian First Nations Peoples, to reimagine a healthcare system that embeds a holistic approach to health, including caring for a person’s Spirit.
This invitation extends to all who wish to actively decolonise themselves and their worldviews, and understand the complexities of First Nations people’s identity, place and belonging and how this influences how we ‘show up’ in the physical world.
By incorporating Spiritual wellbeing as vital to First Nations Peoples’ health, we are honouring our Ancestors by keeping our Wannapi/Miwi /Tuwila strong. We hope this article allows you to connect to your own Ancestors and hold space for us to all connect to our cultures and protocols.
See #KidneyCareTogether articles previously published at Croakey by the AKction team
