Understanding tribal communities and cancer through storytelling, art

Fred Hutch’s Public Art and Community Dialogue Program selects Indigenous artist Roger Fernandes to create new mural
Photograph of Dr. Paul Buckley unveiling artwork created by Indigenous artist Roger Fernandes as part of the Fred Hutch Public Art and Community Dialogue program.
Vice President and Chief Diversity & Inclusion Officer of Fred Hutch Dr. Paul Buckley unveils Roger Fernandes’s art during the celebration of Indigenous Peoples Day and the Public Art and Community Dialogue Program's art unveiling, October 10, 2022 at Fred Hutchinson Cancer Center in Seattle, Washington. A banner with the artwork now flies over the Fred Hutch campus. Photo by Robert Hood / Fred Hutch News Service

Artist, storyteller and Lower Elwha S’Klallam Tribe member Roger Fernandes sees cancer as a monster.

“Both my parents died of it,” he said. “My mom had breast cancer and my stepdad died of renal cancer. It’s attacking you; it’s trying to kill you. It’s a monster.”

Monsters are undeniably scary, but they don’t always win. Not in the stories that Fernandes spins — nor in the real world of oncology, although cancer does hit Indigenous people in the U.S. much harder than other population groups.

Unveiling "The Boy & the Wolf," by storyteller, artist and Lower Elwha S’Klallam Tribe member Roger Fernandes, the second piece of art created as part of Fred Hutch's Public Art and Community Dialogue Program.

Video by Connor O'Shaughnessy / Fred Hutch News Service

According to the Centers for Disease Control and Prevention, Native Americans have higher rates of developing lung, colorectal, liver, stomach and kidney cancers than white people. And data from the National Cancer Institute shows American Indian/Alaska Native populations also have the lowest survival rates for nearly all types of cancer of any subpopulation in the U.S. But the disparities don’t stop with cancer. Three years into the COVID-19 pandemic, “mortality disparities remain exacerbated above pre-pandemic levels for American Indian or Alaska Native people and for Native Hawaiian or other Pacific Islander people,” new research has found.

The reasons for these disparities are multifactorial and include the aftermath of colonization, its historical trauma and the resulting centuries of distrust. There’s also ongoing structural racism; inadequate medical facilities on reservation lands; shortages in health care providers; exposure to toxins from manufacturing and mines built near tribal lands; higher use of commercial tobacco due to stress; and even language barriers. In many tribes, there is no word for cancer.

Fernandes, recently selected as the featured Indigenous artist in Fred Hutchinson Cancer Center’s Public Art and Community Dialogue Program, is trying to defang the cancer monster.

And he believes storytelling and art can help do this by tapping into peoples’ unconscious, spiritual side and giving them strength and hope.

“The western culture has reduced us to a body and a mind,” he said. “It disregards your spirit, your emotional life and those are the places where the foundation of how you approach cancer needs to be built. A few years ago, I was asked to tell stories about cancer and I presented monster stories. But in the end, the hero overcame the monster. There was a message of hope in these monster stories.”

Photograph of a crowd of people gathered on the Fred Hutch campus to celebrate Indigenous Peoples Day and the unveiling of the new artwork.
About 200 people gathered to celebrate Indigenous Peoples Day and the unveiling of a new commissioned artwork, part of the Public Art and Community Dialogue Program at Fred Hutch. Photo by Robert Hood / Fred Hutch News Service

Storytelling and spirituality

When we hear or tell stories or see or create art that reflects struggle, strength and hope, the images and metaphors help us to tap into our whole selves, Fernandes said.

“Art is one of the ways you can tap into your spirit and you can say things that might be difficult for your logical, linear mind to wrap itself around,” he said, explaining that some tribes, like those of the Great Plains, actually see human beings as having four distinct quadrants.   

“It’s called the medicine wheel and the idea is to have a balance between your physical body, your mind, your spirit and your emotions,” he said. “It’s sort of perpetual motion. Balance is something you try to achieve but never quite do because you always have an adjustment.”

Fernandes said cancer patients — or anyone facing a serious health challenge — should try to nurture all four aspects of their humanity.

“You have to have that belief that you’re going to do whatever you can do to stay another day,” he said. “And that doesn’t come from your brain. Your spirit and your heart generate that belief.”

Fernandes once attended a survival camp, he said, where the instructor told the class that the reason most people died when they got lost in the wilderness was not because of bear attacks or exposure, but because they didn’t believe they could survive.

“They believed Nature wanted to kill them,” he said. “If they understood that Nature was there to protect and take care of them, they’d have a chance. But they believed they were going to die, so they struggled.”

Fernandes sees a connection between this and the fear and dread people have of cancer.

“Many believe they’re going to die or believe cancer is something you can’t fight,” he said. “There are ancient, emotional, deep-seated messages that people have about cancer.”

But human beings also respond to stories on a deep spiritual level, he said, because all humans come from storytelling cultures.

“Storytelling is not exclusive to Native American people,” he said. “It’s a universal human process of sharing, teaching, learning and understanding. We have all these new technologies, but we are still human. We still respond to stories. Giving people more data, more research, more reports — it’s all good but it’s the wrong foundation. You need to give people stories that generate belief, that tap into their spirit. Stories are still critical to human beings, and stories and art and ceremonies need to be integrated into a package as a way to help people address cancer.”

'You have to have that belief that you’re going to do whatever you can do to stay another day. And that doesn’t come from your brain. Your spirit and your heart generate that belief.'

— Roger Fernandes, storyteller, artist and Lower Elwha S’Klallam Tribe member

Photograph of storyteller Fern Naomi Renville speaking at the unveiling of the new art for the Public Art & Community Dialogue Program
Storyteller Fern Naomi Renville, of the Sisseton Wahpeton Dakota, Omaha and Seneca-Cayuga Tribes, speaks at the unveiling of the new artwork for Fred Hutch's Public Art and Community Dialogue Program. Roger Fernandes, the featured artist, and Renville, his partner, both participated in Storytelling Circles with Fred Hutch employees as part of the program. Photo by Robert Hood / Fred Hutch News Service

Art, health and healing

Fernandes is helping Fred Hutch do that as the latest artist named in the Public Art & Community Dialogue Program.

Sponsored by the Fred Hutch Diversity, Equity & Inclusion Core, the program is a new initiative that provides an opportunity for artists, employees and the broader Washington state community to be in dialogue about solidarity and the pursuit of equity in research and health care.

The program’s first call was to Black artists across the Pacific Northwest, Uganda and South Africa, where Fred Hutch has established research programs. South African artist Mark Modimola was selected and a banner with his painting was installed on top of the Yale Building on the Fred Hutch campus on June 21, 2022.

Fernandes, chosen to represent Indigenous artists and communities, unveiled his artwork on campus on October 10, Indigenous Peoples Day; it replaced the banner with Modimola’s artwork. Future artwork will represent the Asian and Pacific Islander, Hispanic/Latino, Jewish and LGBTQ+ communities.

Fernandes’ artwork was done in a traditional coast Salish style, he said.

“I wanted to make sure there was cultural accuracy in the way it was done and presented,” he said. "Some elements of the art may be a split image, one side a mirror of the other side, kind of like life. There’s a duality to life, that idea of having a balance of one side reflecting the other.”

Inspiration for the piece was drawn from an online Storytelling Circle Fernandes led on August 23 with Fred Hutch employees and community members. Fernandes shared a traditional Klallam story involving a young boy known as “Slow One” (due to his inability to run) and the nearby Wolf People who helped him overcome this challenge. The story was followed by breakout groups and a larger group discussion regarding the story’s meaning.

A second Storytelling Circle featuring Fern Naomi Renville, Fernandes’ partner and a Sisseton Wahpeton Dakota, Omaha and Seneca-Cayuga storyteller, was held September 14.

“Medicine in the form of stories is medicine from our ancestors,” Renville said during her presentation. “It’s literally power and strength and love from our ancestors in a form that’s impossible to quantify.”

And literacy, she went on, is actually a newly acquired human skill.

“Storytelling predates literacy and even language,” she said. “It’s an old, old form of communication that gets tapped into and it’s still how we communicate emotionally. Our mind says we don’t need stories anymore — we have science and facts — but your psyche still needs to make sense of life and experiences with a deeper story. And storytelling does something to us physically as listeners. It relaxes us as we listen. That’s healing and medicine.”

Fernandes said it’s essential that western medicine does not ignore the spiritual and emotional aspects of a cancer diagnosis.

“When I saw this opportunity, it resonated with me as a storyteller,” he said. “Fighting disease is not just a decision your brain or body makes — you have to get your spirit and emotions ready to fight, as well. I wanted to share that perspective with others.”

Fernandes said he incorporated elements of the original story, as well as the discussion around it, into the artwork he created.

“I wanted to create art that included the little boy, the wolves, the invisible plants and the boy’s face after he’s transformed from scared and lonely boy to confident,” he said. “The art will help people recall the story. And then they can tell that story to other people.”

Photograph of Charles Fiddler, an Indigenous singer and drummer, opening the Indigenous Peoples Day ceremony before the art unveiling.
Singer, drummer and storyteller Charles Fiddler of the Anishinabe (or Ojibway) Tribe opened the Indigenous Peoples Day ceremony and art unveiling with a traditional song as Dr. Paul Buckley helps out with the microphone. Photo by Robert Hood / Fred Hutch News Service

Finding meaning in metaphors

Dr. Paul Buckley, vice president and chief diversity & inclusion officer of Fred Hutch, said Fernandes won the selection committee over with both his artwork and his perspectives about art and storytelling.

“The way his art centers humanity and tribal culture impressed the committee,” he said. “In his application and throughout his interview, it was clear that Roger’s approach as artist, storyteller and educator aligns with our goals for the program.”

According to Buckley, the PACD Program allows Fred Hutch to make an authentic statement about community, health and healing within the context of social determinants of health, like racism and other systems of oppression.

“We wanted to respond to the injustices happening around us with a series of images that reinforce our dedication to affirm the lives of marginalized communities — from the Black community to the Indigenous, Hispanic, Asian, Asian American, Native Hawaiian and Pacific Islander, LGBTQIA+, Muslim and Jewish communities,” he said.

Members of the art selection committee included Craig Dee, a member of the Diné (Navajo) Tribe and a community health educator with the Office of Community Outreach and Engagement; Twila Gleason, also a member of the Diné Tribe and a manager within the Office of Sponsored Research; and Lenora Starr, a member of the Confederated Tribes of Warm Springs in Oregon and Fred Hutch’s patient navigator for Indigenous populations.

Dr. Scott Ramsey, a health economics researcher who has worked with Fernandes and other Indigenous artists as part of his cancer prevention work in tribal communities in Washington, Oregon and Idaho, said storytelling was an effective way to share public health messages.

"Art and storytelling remain a very powerful means for communicating information among American Indians and Alaskan Natives,” he said. “It may be the best way to educate people in these communities about health behaviors related to cancer screening and prevention.”

Fernandes, ever the communicator, said it’s all about finding a common language.

"Doctors give data that is linear and literal about cancer biology and pathology, but most people don't understand that,” he said. “Many people, including Native people, better understand metaphor. Your brain might not be able to pull in all the factors from the story. But stories are not meant for the brain; they are nourishment for your spirit. Stories tell you, ‘Cancer is a terrible monster, but I can overcome it.’”

Photograph of a banner with artwork by Indigenous artist Roger Fernandes being hung on top of a Fred Hutch building
Members of the Fred Hutch facilities team Gregory Blondin (top) and Jorge Castaneda Salazar install a banner bearing new commissioned artwork on top of the Yale building on the Fred Hutch campus, overlooking the Mercer Street I-5 exit, where thousands of people will see it every day. The artwork was created by storyteller, artist and Lower Elwha S’Klallam Tribe member Roger Fernandes. Photo by Robert Hood / Fred Hutch News Service

In April 2022, Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance became Fred Hutchinson Cancer Center, an independent, nonprofit organization that also serves as UW Medicine’s cancer program.

Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org. Just diagnosed and need information and resources? Visit our Patient Care page.

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