Journalism Fellowships in Child and Family Policy

For tribes, traditions may be key to a healthier future

By Mary Annette Pember
Special to The Washington Post

April 9, 2002 - Lorelei DeCora, an Indian Health Service nurse and member of the Ho-Chunk (or Winnebago) tribe, had just spent the day in a South Dakota hospital ward in which every patient was a Native American being treated for diabetes-related problems. As she walked out, she noticed the clinic floor littered with pamphlets about how to prevent and treat type 2 diabetes. Suddenly she had a simple realization: "This ain't working." Pamphlets do not change lives.

Yet in the Native American community, and among other U.S. minority groups, a great many lives must change if the epidemic of type 2 diabetes is to be stopped or even slowed. Prevalence of the disease, which is often related to a high-fat diet and insufficient exercise, has more than tripled since 1990, and it now affects about 17 million Americans. Last week federal health officials recommended that all overweight adults, and some others at elevated risk, get tested for "pre-diabetes" to prevent the damage that full-blown diabetes can wreak.

But in the United States, minorities are anywhere from two to six times more likely than whites to develop type 2 diabetes, according to the Centers for Disease Control and Prevention. Native Americans are about three times more likely than whites to have the disease, according to the Agency for Healthcare Research and Quality. The National Institutes of Health says that some groups of American Indians have the highest rates of diabetes in the world, with 50 percent or more of adults in some Native American subpopulations affected.

The latest medical research shows that lifestyle treatments – improving diet and increasing exercise – are more effective than medications at preventing and treating the disease. For many this is good news, suggesting the epidemic can be addressed without expensive drugs or risk of side effects.

But getting people to make these changes has proved quite difficult, especially in communities of color. The problem may lie in the fact that lifestyle and eating habits – where and when we eat, what we eat and what we do when together – are closely tied to who we are as people, as members of certain families, social groups and cultures.

In mainstream clinical settings, Native Americans are often labeled "noncompliant" – as
patients unwilling to help themselves by making changes in diet or taking medications.
Practitioners frequently conclude that the patients simply don't care about their health. This view, according to DeCora, fails to acknowledge the way cultural background may discourage or even prevent compliance with a common course of treatment.

For example, she said, the idea that family members come first and one's own needs come second is deeply embedded in native cultures. This may lead some tribe members to feel it's selfish to make self-care a priority. According to findings by Toni Tripp-Reimer, professor at the University of Iowa College of Nursing, Native Americans may fear that having diabetes reflects a failure to live properly and to be strong of spirit, causing shame – and reluctance to pursue treatment or even reveal their diagnosis to others.

DeCora thought about the problem. Then, like her ancestors, she decided to pray until an
inspiration came.

It came while she was attending a Sun Dance, a days-long ritual of fasting, dancing and
communing with both nature and spirits. She focused her meditations on the Sun Dance
tree. The tree was forked, one side carrying a figure of a buffalo and the other a figure of a man. Both were cut from the same buffalo hide. The tree represents good and evil and the delicate balance among men, animals and Earth. During her prayers, a message came to her: "The answer lies in our traditions. The answer to everything we are facing lies within our traditions."

Talking circles

While growing up on the Winnebago reservation in northeastern Nebraska, DeCora remembers seeing "talking circles," groups in which tribe members sat in a big circle and talked about community problems and issues. These circles demonstrate the native view of the interconnectedness of life, the cycle of life and death and balance in the natural world. Most tribes, embracing an oral rather than a written tradition, share tribal lessons of history, ceremony and cultural life in the form of stories told and retold in group settings. Talking circles remain an important part of many native cultures today.

In 1998, six years after her inspiration, DeCora joined researcher and University of Minnesota professor Felicia Hodge, who had secured a grant from the NIH's National Institute of Nursing Research to develop and test talking circles as part of a community diabetes program. Hodge, a Wailaki woman from California, had been conducting research using a similar model among Native American cancer patients.

In the study, conducted at four rural tribal sites in South Dakota and Nebraska, adult diabetics and those at risk of developing the disease received information about diabetes via talking circles, storytelling and native health practitioners.

Findings – which were released to the NIH in March but not yet published – indicate that people in these groups, which met once a week for two or three hours over a period of three months, showed a significant decrease in fatalistic attitudes toward diabetes, plus an increase in general knowledge of the disease and improved overall health.

Fatalism kills

Fatalism – the belief that disease is inevitable and that no medical care or personal changes can forestall death – can be a powerful barrier to treatment. Winnebago Health Service nurse Michelle Smith vividly remembers encountering it in her very first diabetes patient.

"I was very excited and enthusiastic about helping the tribe overcome diabetes," she said. "I spent a long time preparing for his visit, accumulating IHS and NIH literature on lifestyle change and facts about caring for diabetes. I was loaded for bear."

The patient, a young Ho-Chunk, appeared at her office door and leaned against the jamb with his arms crossed over his chest. He made it clear he would not enter the office.

"Just tell me this," Smith recalled him saying. "How long before I go on insulin, how long before I need dialysis and how long before I die?"

While that may be a dramatic demonstration of fatalism, it does represent a widely held feeling – and one that can be dangerously predictive. Those who feel medical care is hopeless often do not receive it, and so their condition worsens, making their condition hopeless indeed. By the time physical symptoms of diabetes – fatigue, blurry vision, persistent infections – develop to the point where medical intervention is required, the body has usually suffered from years of excess blood glucose, leading to irreversible damage to heart, kidneys, lungs and other vital organs. Dialysis, amputation and/or heart failure often follow. This scenario is so common in native communities that it feeds the perception that diagnosis is an inescapable death sentence.

Yet the researchers' work showed that talking circles kept the fatalism at bay – and helped improve the participants' health. The trick now was to take the research back to the people.

In practice

Inspired by DeCora's research, Georgia Gomez, a tribal community health representative and
emergency medical technician on the Winnebago reservation, worked with Smith to produce a program she calls "Team Up."

Funded by a small grant from the tribe, the three-day program is conducted at a Sioux City, Iowa, hotel and conference center, about 20 miles from the reservation. Participants are fed a controlled diabetic diet with an emphasis on traditional foods, and receive education, exercise demonstrations and emotional and spiritual counseling by local native leaders, all in the setting of a talking circle. Blood sugar testing is conducted throughout the program to provide tangible proof, in the form of lower blood glucose levels, that even brief and moderate changes in diet and exercise can have immediate impact.

Last August, the group participated in a traditional outdoor feast celebrating completion of the program. Spiritual leader and Type 2 diabetic Orville Little Owl, gave a traditional blessing and thanksgiving during the final talking circle, in which everyone was given an opportunity to share their thoughts and feelings about the process. Little Owl's willingness to "come out" as a diabetic sent a strong message to participants that one can continue to be strong in spirit while openly dealing with the disease. A pouch sewn by a native healer from the Lakota tribe was passed to each member as he or she spoke.

For many, the final circle was emotionally powerful. One woman choked back tears: "If my own people can care enough about me to go to all this trouble, I can care enough to take care of my diabetes." In honor of the event, women in the Winnebago community produced a star quilt that contains the names of those who have died from diabetes complications.

Gomez, a diabetic herself, brings a fierce personal commitment to her campaign. Her mother, Mabel Denny St. Cyr, died on dialysis in January, her kidney disease a complication of diabetes.

"I could choose to be overwhelmed, but I choose to take my pain and grief and do something in a good way," she said. "We are obligated and responsible to make a way for those who come after us. Not only does this have to be a prayer, it has to be an act."

Beyond the three-day program, other changes are taking place among the Winnebago. The
tribe's "Whirling Thunder" program provides free wellness and fitness classes to the community, including children. Tribe members have free access to a gym with exercise equipment, an outdoor running track, walking path and swimming pool. Tribal employees are allowed one paid hour to exercise during the work day.

Reintroducing traditional foods to Ho-Chunk society is also part of the effort. "Children of the Wicawas" is a project in which children learn traditional gardening, food preparation and preservation methods. DeCora's project has published a cookbook featuring modern updates of traditional Ho-Chunk foods, such as buffalo and rice soup, buffalo pie and a modern twist on Lakota dried meat and chokecherries. "Before we can start talking about nutrition," DeCora says, "we have to renew the spiritual connection our people had with food as a gift from the creator. It makes sense for us to renew our bodies with that traditional source."

None of which means daily life, or the lifestyle decisions everybody must face, has become easy. Brigette Little Owl is, like her husband Orville, insulin-dependent, and their son Spencer, who is 9, has screened positive for AN – acanthosis nigricans, a dark marking in the fleshy folds around the neck and groin that are early indicators of insulin resistance in Native Americans.

Brigette is working hard to make changes in her cooking, reincorporating some of the healthier traditional foods such as lean buffalo meat and fresh, home-grown vegetables. But like many American kids Spencer and his brother Kendall, 10, like to come home after school, snack and watch TV, and she says it's hard to say no to the boys when they crave "the bad stuff."

But seeing the AN mark on Spencer's neck every morning is also a strong motivation.

"The best thing the circles taught me is that we don't have to die from diabetes," Brigette says. "Now I know my family has a chance."

Mary Annette Pember, a Cincinnati-based writer specializing in Native American affairs, studied culturally appropriate disease interventions during her fellowship in child and family policy at the University of Maryland, College Park.