Introduction by Croakey: The third World Indigenous Cancer Conference took place in Naarm (Melbourne) this week, March 17-20, receiving a warm Welcome to Country from Wurundjeri people.
It was a packed house, with around 540 very enthusiastic attendees from Australia, Canada, France, New Zealand, Sweden, the United Kingdom, and the United States.
In coming days, Croakey will report on some key presentations from the event, but for many at the conference, a highlight was being part of a group of Indigenous People from around the world who have chosen to work to achieve equity in cancer outcomes for their Peoples.
In the post below, Danielle Manton reads the room on participants’ motivations and aspirations.
There was some great tweeting at the conference. If you’d like on-the-spot insight into some of the presentations, do browse via the hashtag #WICC2024.
Also listen to this interview aired on SBS, on day one of the conference, with one of the 2024 WICC Convenors, Associate Professor Kalinda Griffiths, Inaugural WICC Convenor Professor Gail Garvey AM, and Professor Grant McArthur AO, VCCC Alliance Chief Executive Officer.
Danielle Manton writes:
Speaking at the opening plenary of the 2024 World Indigenous Cancer Conference (WICC) earlier this week, Professor Linda Burhansstipanov looked out at the sea of expectant delegates, and really saw the people in the room.
Burhansstipanov, a member of the Cherokee Nation of Oklahoma and President, Native American Cancer Initiatives, said working in cancer care was not easy or glamorous work, but it is important work – important for our children, our families, our communities and our Peoples, who experience high prevalence and are adversely affected by cancer globally.
Burhansstipanov told the conference that Indigenous Peoples globally work in cancer care for the “grace, the spirit, the love and the strength of our cultures. This is what we are doing and it’s why we’re here, this is why Professor Gail Garvey started the first World Indigenous Cancer Conference.”
“It is due to your work we are making progress.”
She went on to encourage conference delegates to “look beyond the data, we need to look into the eyes and hearts of people affected by cancer”, which includes the people working in cancer care.
Marie McInerney explores more of these themes with Professor Burhansstipanov, in a video interview here.
Talia Pfefferie, Director for First Nations, Inuit and Métis Cancer Strategy, Canadian Partnership Against Cancer, picked up this thread in her presentation to the plenary, sharing her story about what is at the heart of her work and influences her thinking and approaches – her process.
Pfefferie said, “Why I’m here, why I do this work, it’s personal. I am a Metis person, Treaty Six territory.” She generously shared with the delegation her personal connection to improving cancer care: “My father, who passed of pancreatic cancer.”
She went on to share with us, “I am the first generation where our children are staying at home and are raised in our cultural ways”.
Pfefferie made the powerful and impactful connection that, “Where I come from, it’s not work, it’s life. It’s what I live. The impact is beyond the work itself and the numbers and the data – it’s if my family lives; if my grandchildren live.”
Inspired by Pfefferie’s words, Croakey approached conference delegates about how they came to be doing the work they do and what keeps them going.
What motivates people working in cancer care?
Melissa Sheldon, a melanoma survivor of 15 years and now consumer advocate for the Victorian Comprehensive Cancer Centre Alliance (VCCC Alliance), told Croakey:
I love giving back. It speaks to my heart, I am on several different programs supporting research, health equity, consumer-led personalised cancer care, molecular testing and consumer group leadership – helping inexperienced consumers become more experienced, helping them lead where they choose to.”
Sheldon’s advice to inexperienced consumers is to “find the right team, listen and share your story but remember everyone is on their own journey”.
Waulu McCartney is a proud Wamba Wamba Wurundjeri women from Victoria. “I like working with my people – in health promotion, health awareness and their keeping information up to date so they can make informed decisions for their own care. It means a lot when you’re helping your own people,” she told Croakey.
McCartney shared her personal connection with cancer, motivating the work that she does as a project officer in chronic health with VACCHO.
“I’ve had multiple family members that have had cancer in the past. My grandmother had lung cancer, my dad has had multiple skin cancers chopped out, my mum has had skin cancers chopped out, multiple family members that have passed away from cancer, had cancer or they are fighting cancer at the moment. It is big in community. People don’t talk about it but, once you ask the question, you realise how prevalent it is in community.”
Kiandra Brown, Gunditjmara women, is also a project officer in chronic health with VACCHO, working on the Beautiful Shawl Project, a community-led initiative in breast screening for Aboriginal and Torres Strait Islander women. She said,
I’ve grown up in the community, working with community and a lot of my family work in the health sector, and I have family affected by health issues so that motivates me to do this work.
Working on the beautiful shawl and seeing the work that we do and the results of it, it’s that saying ‘Aboriginal health in Aboriginal hands’ that just keeps me going.”
#AboriginalhealthInAboriginalHands
Jay Hamann, Aboriginal Liaison officer at Melbourne’s Peter McCallum Cancer Centre, explained her motivators in this way:
“I do the work that I do because I am very passionate about the Aboriginal community and supporting good health within the Aboriginal community, particularly helping Aboriginal patients navigate hospitals, making sure they are fully informed with more input, power and control over their health and that they feel culturally safe. I have heart disease and have been involved in the hospital system a lot over twenty years.”
This was a common theme among the people Croakey approached – motivation to work in cancer care to build knowledge and understanding of the disease, including prevention and control, but also to assist in navigating the system, for the system to meet our healthcare and cultural needs.
What motivates people is improvement – for experiences to be better. As Professor Burhansstipanov said in her presentation, “We want the next generation of people who go through the cancer experience to have a better experience, we want to see constant improvement.”
Leonard Benoit, member of Qalipu Mi’Kmaq Nation and an Indigenous patient navigator with the Toronto regional cancer care program, said:
I have been a nurse for 20-something years, seeing the inequities and blatant racism in healthcare.
I wanted to take my experience as a nurse and turn that around and hopefully make someone have a much more favourable interaction coming into healthcare.
We know the healthcare system is a beast to navigate. I still get challenged by that after many years in nursing. I wanted to make sure someone could have a better experience than they would’ve had previously.”
Fofoa Pio-Bentley is a New Zealand-born Samoan and PhD candidate who presented at a concurrent session on ‘Exploring the experiences of racism and discrimination for Samoan cancer patients and their aiga (families) going through cancer care pathways’. She told Croakey:
As a daughter of someone from Samoa we are over-represented in a lot of the stats, so we have poor access to care, specifically cancer care and it really is just trying to help build the evidence for the Pacific and Samoa specifically.
I want to focus on Samoa because I am Samoan but also if I focus on Pacifica as a whole, there are so many differences amongst the Pacifica nations. All of us have been affected to some extent, I have had family members pass away and close friends – mis-diagnosis, late diagnosis where a lot of it was preventable.
It’s not just the loss of a loved one it’s across families and communities. If I can just add something meaningful to what is known and what is not known, trying to fill a gap. There are data and statistics but how do we make it mean something, create priorities for our communities and governments?”
Making progress, with a long way to go
Lea Bill is from Pelican Lake First Nations in Saskatchewan and is Executive Director of Alberta First Nations Information Governance Centre. She was an International co-convenor of the WICC.
She told Croakey that, while her motivation to work in the cancer sphere related to inequities in cancer care, “I was really called to do the work because my husband was diagnosed with prostate cancer. I was recruited to be a project manager shortly after he was diagnosed. He was a 10-year survivor of prostate cancer.”
Bill has been working in cancer care over the past ten years and spoke of the progress she has noticed over that time:
While there is more awareness, our numbers haven’t changed. They are still extremely high, but what has changed is an awareness and more of a willingness for allies to work with us, but it has been a real struggle.
In Australia there have been steps backwards around acknowledgement and recognition of Indigenous and First Nations peoples. In Canada, we have made a lot of strides in terms of trying to balance the table, whereby we are sitting at tables and having greater influence in not just cancer but in health.”
Watch this video interview from Croakey’s Marie McInerney, with Metis researchers, Susie Hooper and Katina Pollard. Some great advice at the end of the video from Susie Hooper:
“If your heart feels good with the work that you’re doing, you know you’re in the right spot.”
From Twitter/X
Author details
A Barunggam women, grown up on Dharug Country, Danielle Manton is a Senior Lecturer in Indigenous Teaching & Learning at the University of Technology Sydney (UTS). Danielle is a PhD candidate at UTS in the School of Public Health. Her PhD research explores privileging Indigenous perspectives and voices into the allied health curriculum.
Bookmark this link to track Croakey’s coverage, and follow the conference news on Twitter at #WICC2024 and via this Twitter list of presenters and participants.
