Community Wisdom

Nan LittleWalker never formally signed up to be one of my teachers. In fact, I first met her as one of my colleague’s patients. Several years ago, during my doctoral training as a therapist who specializes in working in medical settings, I interned at a small family-practice clinic in an old strip mall in a low-income neighborhood on the east side of Saint Paul, Minnesota. The clinic served a diverse clientele of Black, white, Hmong, Somali, Karen, Thai, and Burmese patients. Most were on governmental assistance. Many lived in public housing; others were experiencing homelessness. As the only onsite mental health trainee, every day I felt a combination of excitement, anxiety, camaraderie, and isolation.

Some of my time was structured in ways familiar to conventional therapists—50-minute visits in a comfortable private office—but most was spent running from one exam room to the next, supporting medical residents in calming angry patients, completing mental health assessments, and adding compassion to the delivery of bad news, like when a pregnancy wasn’t viable or a patient had tested positive for HIV.

Nan was in her 60s and small in stature. On her intake form, she’d marked her ethnicity as Native American, and she and her aunt were the only Indigenous patients I’d ever seen at our clinic. She’d been diagnosed with diabetes several years earlier. To me, she always seemed shy. In our early conversations, she’d respond to my questions with short answers and never looked at me. Only later would I learn that she was an esteemed elder and leader in the local American Indian community. I never could’ve predicted that she’d become one of my closest partners in a project that would transcend its stated mission of educating Indigenous people about diabetes—or that she’d become a source of therapeutic connection for some of the hardest-to-reach members of our city.

Our clinic was working to create and sustain an initiative that connected patients living well with diabetes with patients struggling to manage it. Because diabetes includes psychological, familial, and social challenges, I was one of the professionals working alongside our physicians. Nan was doing well, so we’d invited her to offer support to patients in ways that providers could not. She agreed, but while the program, Partners in Diabetes, was successful by our measures, I could see that her interest in it was soon beginning to wane.

At the close of one leadership planning meeting, Nan said to no one in particular, “Diabetes is decimating my people.” Several folks were already putting on their coats and small-talking. I was dragging furniture back to its usual places but stopped to sit across from her.

“It’s a huge problem,” I agreed. “I just read that prevalence rates in the U.S. have gone up again.”

“Those statistics that you doctors rattle off mean nothing,” she said, staring at the floor.

I could tell that Nan was upset, and I wanted to comfort her. It was my instinct as a person and a therapist. But I also felt a bit defensive about her characterization of my knowledge as meaning “nothing.” I worked hard to stay up to date with information like that.

“Nan, who’s dying?” I asked, expecting her to open up about a loved one.

“My people,” Nan answered. “Native people.”

Of course, she was right. Given well-known disparities in healthcare, some groups—like American Indians—suffer certain medical conditions at considerably higher rates than the general population.

“Can we engage them in Partners in Diabetes?” I asked, without really considering that I didn’t know anything about Indigenous cultures.

“My relatives won’t come here. They don’t trust Western medicine,” Nan said, referring to generations of colonization and historical trauma endured by Native groups. “And even if they wanted to, they don’t have health insurance. They can’t come.”

I started talking about low-cost or no-cost programs that our clinic could offer, but she cut me short.

“What you’re doing here does not line up with Indian ways.”

“What do you mean?” I asked, puzzled.

Nan was silent for a long time. Then she said, “If you want to find the answer, you need to walk with us—not out in front.”

“Okay,” I replied. “I’d like to try that, but I also want to do something about the problem.”

“Well,” she said, “I don’t know, but don’t be ‘Dr. Mendenhall’ when you do it. Or even ‘Dr. Tai.’ Nobody’s impressed with titles like that.”

That conversation spurred a major change in my professional life. Much, if not all, of my training had taught me to be an expert with my patients, their families, my residents, and my students. Having letters at the end of my name confirmed to me that I was a problem solver, and even an agent of wisdom. I’d been socialized to be pretty hot stuff! I didn’t know it then, but I was finally going to learn—and internalize—that the biggest untapped resource in healthcare is the knowledge and wisdom of our patients and their families.

An Unexpected Call to Action

That day, Nan invited me to a local American Indian service agency. She explained that it was important to meet at a location managed by Indigenous people, rather than at a Western care facility, to ensure that her relatives and colleagues would feel safe. About a week later, I drove to the agency, tucked away in a small church on a residential block.

I felt way out of my element. I was used to meeting with patients, students, and colleagues on my turf, in integrated health clinics and universities. Now I was in a church basement, with cinderblock walls covered in myriad forms of Native art—beautiful images, quilts, and musical instruments. A large drum sat in a corner.

Nan introduced me to three other elders—Shannon, Beverly, and Sam—and, without knowing it, we began what would become a three-year conversation. In that basement, we talked about how to build health programs that didn’t yet exist, from a foundation of trust and reciprocal understanding that didn’t yet exist, either. The elders taught me about the diversity of Indigenous cultures and tribes—Dakota, Ojibwa, Ho-Chunk, and others—and about Native belief systems related to health. I remember getting excited early on when Shannon shared how the four quarters of the medicine wheel, a sacred hoop symbol, represent dimensions of health that connect the mind, body, community, and spirit.

“We do this through the biopsychosocial-spiritual model,” I exclaimed. I began to lecture about how innovatively responsive Western medicine was to these intricate relationships. Nan kicked me under the table. Hard.

“Listen, Tai,” she whispered. “God gave you two ears and one mouth for a reason.”

I stopped talking, embarrassed.

Shannon went on to explain how, by “walking in balance,” we honor the complexities of our personal selves in communion with others and our Creator. She explained how we get sick when we get out of balance, either by neglecting parts of our whole selves, or by relying too much on one thing to feel better. Hearing this, I realized that Native people had been spiritual model for millennia.

“Colonization, processed foods, poverty, and many other things have gotten us out of balance,” Sam added.

“We don’t need new medicines, artificial pancreases, or other Western panaceas,” Beverly said. “We need to reclaim what we’ve lost along the way.”

This conversation, and many others, were part of my long process of building truly collaborative relationships with community elders and following Nan’s advice to walk alongside them instead of out ahead. Gradually, I learned to listen more than I talked and tried to fix. Over time, I was invited into talking-circles, powwows, and other community events. I learned what can’t be taught in a “diversity” course in school, like how to slow down and begin meetings with group prayers and smudging—burning sage or sweet grass—to ask the Creator to bless our good and meaningful work. I learned the importance of spirit plates, comprised of food left for ancestors to receive nourishment through our gratitude. Some things went smoothly; others were clumsy and awkward. I initially felt uncomfortable when purchasing and then offering unprocessed tobacco or abalone shells to elders when asking for their advice, and I was mortified when a community member physically stopped me from getting in line at a buffet because those older than me hadn’t yet gotten their food.

I never could’ve learned in school what it felt like to be a white man invited for the first time to drum and sing with Native men at a community event. Or to be gifted with a dreamcatcher that an elder had made especially for me. Or to lead a prayer at a local gathering. Or to be asked to visit members of the community who were dying, and to participate in the elaborate and beautiful funeral rituals that followed.

Building Trust Takes Time

When I tell Western clinicians that we spent three years building relationships before we launched our family-based diabetes program in the Native community, they balk, certain we could’ve found a shortcut. Establishing authentic trust is a long process. At first, our Native colleagues saw us clinicians—biomedical and mental health alike—as stereotypical Western providers: insensitive, always in a rush, quick to interrupt, and usually clueless. We needed to change how we understood and engaged with Native people, and at the same time, we needed to share the tensions we faced as healthcare providers. I remember, for example, talking about the differences between Western and Native cultures regarding time and punctuality.

“The clinic makes a big deal about us being on time, but then they make us wait,” Sam said. “And then when the doctors see us, they’realways in a hurry.”

I explained that our clinic administrators require physicians to see 20 to 30 patients per day, and that if a patient needs anything that isn’t routine, the physicians are behind for the rest of their shift. I added that mental health providers working in medical settings are often under similar pressures.

“Your clinic shouldn’t make you see so many people,” Sam protested.

“But then we’d go bankrupt,” I said. “Keeping the place afloat is super expensive. Clinics have to walk in balance too.” I described how we were always trying to balance clinical, financial, and administrative needs. I explained, too, how all the forms we fill out and surveys that we ask patients to complete are crucial to providing high-quality care in the long term.

“Administrators and doctors need that data,” Shannon said to the group.

These kinds of exchanges went a long way in showing the American Indian elders that we were willing to explore new ways of addressing diabetes in the Native community while sharing honestly about our own professional needs. Only because we took the time to have those conversations could we ultimately create interventions that were both empirically sound and informed by Indigenous worldviews and practices.

We called our first program FEDS, for Family Education Diabetes Series. The name was Nan’s idea, a callback to the genocide of Native peoples. “It was the federal government who colonized us,” she explained. “They broke our treaties and took our lands. They stole our children and put them in boarding schools. They cut their hair, dressed them in Western clothing, and stole our languages. They made us eat the processed foods that gave us diabetes.”

“Won’t calling it the ‘FEDS’ turn people off?” I asked.

“I think it’s empowering,” Nan said. Others nodded in agreement. “Despite all their efforts to kill us, we’re still here. And it will get people’s attention.”

It certainly will, I thought.

FEDS doesn’t function like a provider-led group, wherein power­less patients show up to get fixed by expert providers. Nor is it an Alcoholics Anonymous–style peer support group. Instead, we’re all citizens—citizen professionals and citizen patients—who offer our own respective expertise and wisdom in a struggle that requires everyone’s participation. This model can be hard to pull off, because clear-cut hierarchical roles are sometimes easier to slip into. Those of us with clinical backgrounds constantly have to negotiate how to present information without sliding into the role of expert Western provider.

Through working with FEDS, I’ve come to believe that professionally led, top-down service-delivery approaches just can’t handle everything that patients present to us, regardless of where we work, which population we’re trying to support, or what clinical issues are at hand. During my graduate training, I’d been immersed in debates about the comparative efficacy of various therapy approaches, but those questions began to lose traction for me as I felt the urgency of Nan’s call to action. Her people were dying. Traditional models of providing care to one patient at a time weren’t creating real change. Working with our FEDS cofounders, I saw that many of the solutions that we seek can be found instead within the partnerships that we create together.

Annual Menominee Nation powwow. Photo © Ken Duffney/Shutterstock.com

For more than 15 years now, FEDS has met biweekly in the same church basement. During each 16-session series, American Indian patients, their loved ones, former-participants-turned-mentors, medical and behavioral health providers, researchers, students, and tribal elders come together.

Our leadership team makes careful decisions about how everything is done. For example, as participants arrive, they’re presented with an individualized folder and paper health record to give them a sense of ownership and agency. As in a typical visit to a doctor’s office, participants have their weight, blood pressure, and blood glucose levels checked, but in our setting, those tests are run by medical students and fellow community members. And all participants, including the students and professionals, track their own personal health data.

The evening begins with one of our elders leading us in prayer, a spirit plate, and smudging. We then share a healthy meal consistent with Native cultures and watch as a Native cook gives an often animated presentation about the food’s ingredients, cost, and indicated portion sizes. Then, a professional and a community member together lead the main presentation, always sure to include both clinical information and wisdom from lived experience. Speakers cover subjects like the physiological benefits of exercise, paired with advice on how to work out when you can’t afford a gym or don’t feel safe walking in your neighborhood. Or the coleaders might discuss the effects of depression on metabolic functioning, paired with culturally sensitive advice on how to talk about mental illness. During these evenings, patients, their family members, students, and medical professionals all dance to drumming and singing and participate in talking circles, integrating Indigenous practices with Western care.

The program is free of charge, and almost everyone who attends lacks health insurance or regular access to primary care. Over the years, Nan and I have written many grant proposals together. When we secure funding, we have the resources for more formal types of glucose evaluation, more research assistants, and speaker honoraria. When we don’t have funding, we all eat potluck-style and volunteer our time. Nan and I have shared the story of FEDS at conferences, powwows, and local assemblies. Clinicians and professors often ask how we can expect the program to survive over time without consistent funding, but in fact, our program’s sustainability is one of its greatest successes. Unlike many other so-called community projects, which fold as soon as a grant runs out or a professional gatekeeper is gone, our projects are owned and operated by their participants.

Solving Problems Together

If we clinicians had kept “walking out in front,” one of our most important initiatives never would’ve come to be. When FEDS was roughly five years old, we grew concerned with the fact that 60 to 70 percent of our consistent participants were female. These concerns echoed what I was hearing across broader medical and public health arenas, too. We needed to improve our engagement with minority men in health programming.

Because our guiding principles call for engaging all participants as coproducers of healthcare, we brought the problem back to the group. Over several FEDS meetings, all of us—elders, clinicians, patients, and family members—discussed what we could do to include more men.

“A lot of guys know about FEDS, but they’re not super interested. I don’t think they want to come to a group where they have to sit indoors and talk about things,” said John, a member who’d been coming to FEDS with his sister. John was imposing in stature, tall and stocky, with a deep and resonant voice, but he carried himself in an inviting and friendly way. His eyes were kind, and he often smiled spontaneously.

“I could talk with some guys,” he said. “I think we can come up with ways to work together to be healthy and all that, but not so much in a classroom format like this.”

I felt appreciative of John’s offer, but also uncomfortable—again. I liked how smoothly FEDS was running and was hoping we could find a simpler solution. Maybe we just needed to advertise better or encourage more of the women who were already coming to bring their partners, brothers, or sons with them. But I knew that this wasn’t my problem to solve alone. We needed to figure it out together. By then, after years of work, I’d learned to override my instinct to interject with what I thought was the most efficient solution.

What followed was the creation of our men’s group. Like FEDS, it’s led by a combination of community members and professionals, but unlike FEDS, which has a set schedule and a single location, the men’s group is more free-form and dynamic. It’s always buzzing with activity. Men participate in gatherings with sacred offerings, smudging, prayer, drumming, singing, dancing, and talking circles. Elders lead conversations during which they describe how 500 years of physical, social, and spiritual genocide have created intergenerational pain, and clinicians share information about how trauma affects the body. Men discuss living in contemporary Western culture, coping with poverty and unemployment, and collectively taking back valued traditional practices. When the men talk about disparities in diabetes, heart disease, alcoholism, and cancers, for instance, they also talk about how their prevalence is a consequence of colonization—forced changes in land allotment, physical activity, and access to commodity foods.

The men build and repair sweat lodges together. They grow wild rice and harvest maple syrup. They organize ice-fishing groups in the wintertime and softball and basket­ball teams in the summertime. Everything they do reflects a collective support for healthy living—and includes both Native men and Western providers and students. Everything they do connects the men’s efforts to gratitude for the Creator, their ancestors, and Indigenous peoples, and to their dignity as leaders, role models, and sources of support for youth and other men. At present, the men’s group involves more than 100 men.

“Instead of talking about physical activity and exercise to help with diabetes and being healthy, the guys are doing it,” John said to me when we were at a powwow. We had to yell more than talk because men were drumming and singing all around us.

“And instead of talking about ways to combat social isolation,” I responded, “they’re here together, engaging with each other as a group.”

John smiled. “I don’t think they’d call it ‘combating social isolation,’ or ‘engaging with each other,’ but we all know what you mean with your doctor words.”

Outcomes That Matter

A couple of years ago, I was helping some of the members of our men’s group fill out questionnaires on the hood of my car at the edge of a field where they were about to play softball. I’d been continuously collecting data on health outcomes, and they showed that our programming was making real improvements in weight loss, metabolic control, and blood pressure outcomes. These results were getting attention, too, from the clinic directors and other colleagues at the university. But it was my attempt to collect still more data—this time to meet a funder’s requirements—that grounded me again in what we were really doing.

“Our guys are getting a lot more out of this than diabetes knowledge,” John told me.

“I hope so,” I said, not really knowing what he meant.

“I think that you should ask them about what matters, instead of these questions about diabetes.”

When I asked John what he meant, he just smiled, shook my hand like he always did, and walked to the field to join the rest of the team, carrying a bag of bats over his shoulder.

Over the next several weeks, I followed his advice and started asking men what they were getting out of the men’s group.

“This program saved my life,” a thin young man, Nicholas, said during a talking circle. His hair was long and braided. He was slowly spinning a bottle of water in his hands.

“Diabetes can be deadly,” I replied.

“I was suicidal with a plan,” Nicholas said, looking up at me briefly. “In fact, I was going to do it that day—on the day that you all invited me into this group.”

I didn’t know what to say, so I chose to listen.

“You see, many of us men have lost our way,” he said. Many of the other guys murmured their assent and nodded their heads. “We’ve lost our culture, our language, and our family roles. Everything, everywhere. We don’t have anything anymore. This group helped me belong to something.”

I’d stopped taking notes. I was looking at him, and at the other men in our circle.

“The others, all of you, help me,” he said, gesturing around with his hand. He paused. “And I help them.”

“Yes, you do,” another man, Paul, said. He reached over to the young man and lightly shook his shoulder.

“This group is supposed to be about diabetes,” Paul said. “But it’s more than that.”

“It’s a lot more than that,” another man said. Then, several began sharing similar sentiments—all talking over each other.

I flashed back to the crossroads I’d arrived at so many years before, facing one comfortable, familiar path as an expert therapist, and another path, uncomfortable and humbling, as a citizen professional. I used to think that my patients had to see me on my turf, one at a time. And yet here was a man I barely knew, talking about how our co-owned group meant so much to him. As I turned my attention back to the men’s conversation, I couldn’t keep track of who was saying what, but I knew that whether I perfectly recorded, transcribed, and coded data from this conversation wasn’t what mattered. These so-called “auxiliary findings” weren’t part of any grant’s formal evaluation plan, but they were the real outcomes, the ones that mattered. They were the ones we would have missed had Nan not kicked me under the table at that long-ago meeting, and whispered, “Listen.”

LEAD PHOTO © ISTOCK / SVETLANASF