Lorelei DeCora

1993 Robert Wood Johnson Foundation Community Health Leader

    • February 28, 2002

Position: Administrative Consultant, Porcupine Clinic
Porcupine, S.D.

  • "Lorelei saw the need for a health facility in our community, which had no health care provider. She was able to motivate people in our community to realize her dream and assume the responsibility of making it happen. Rather than wait for the federal and/or tribal government to respond, she was able to convince us that we could do it ourselves. As the program began to emerge, people in the community began to see that there is a way out of the dependency that has befallen our people. Taking it one step further, Lorelei has helped people throughout the reservation better understand the true meaning of 'self-determination.'"
    —Board Member, Porcupine Clinic Health Board

  • "It's taken at least a hundred years for us, as a people, to evolve to this point of bad health amongst other things…. I know that I may not see the results of the struggle in my lifetime, but my children might, or my grandchildren. If it means that my grandchildren don't have to grow up losing loved ones the way I experienced it, then it makes it worth it. So the light at the end of the tunnel is not that I'm going to do all these great, wonderful things in my lifetime, but that I carried the struggle further, and that I taught my children correctly, in the way they choose to continue the struggle for Indian people. I'm secure that if I do right, I'll be able to see it from the spirit world."
    —Lorelei DeCora

Lorelei DeCora is a proud Native American—an enrolled member of the Winnebago tribe, Thunder Bird Clan. Through her mother, she is also related to the Minnecojou Lakota Sioux. Her great grandmother survived the infamous 1890 massacre at Wounded Knee Creek—and in 1973, Ms. DeCora herself became a participant in the second siege of Wounded Knee.

Ms. DeCora's lifetime of activism began much earlier. In the early 1960s, she attended Catholic grade school on the Winnebago reservation in Nebraska, but resisted school officials' efforts to sever her ties with her cultural traditions. During high school, she and her family protested a history book, Hawkeye Tales, used by the Sioux City public schools, that conveyed a negative, racist view of Native Americans. The protest resulted in the book's removal from Iowa public schools. In high school, she also became a youth representative to the national board of directors for the American Indian Movement (AIM), an organization whose founders were determined to hold the federal government responsible to the treaties it signed with their ancestors. Through AIM, Ms. DeCora became involved in the larger Native American protest movement, participating in the Trail of Broken Treaties caravan to Washington, D.C., in 1972.

It was also through her involvement with AIM that in 1973 Ms. DeCora, then age 19, came to be at Wounded Knee, S.D., when those protesting a lesser standard of justice for Native Americans were surrounded by heavily armed federal marshals. This action started a siege that lasted 10 weeks, and resulted in several deaths and injuries. During the occupation, Ms. DeCora, though inexperienced and unprepared, took on the role of medic, nursing people with bullet wounds from the gunfire federal marshals directed into the village. Out of this experience, Ms. DeCora came to see that "Indian people were very dependent on non-Indian providers for health care, and that unless we became the doctors and nurses, we would never really have true control over our health." In this insight was the birth of a vision of collaborative health care, by and for Native Americans. Ms. DeCora decided then and there to become a nurse.

In 1974, Ms. DeCora was tried in federal court for her involvement at Wounded Knee. After a three-month trial, all charges were dismissed. Ms. DeCora, now married to an Oglala man, moved to South Dakota's Pine Ridge reservation—one of the poorest communities in the United States. Its 20,000 people live in an arid, semi-barren area the size of Rhode Island plus Delaware. There is little economic activity, and unemployment runs more than 80 percent. Says Ms. DeCora, "I moved to a reservation where, in a simple car accident, people die because of lack of knowledge about controlling bleeding. Several things make hospitals inaccessible, including the distances, weather, and sometimes impassible roads. I was just appalled that people had to live without access to health care. I knew there was a difference, because I came from another reservation. My mother worked in a non-Indian hospital for 30 years, in surgery. I valued health care because of my mother, and I knew that it could be accessible for us."

Over the next several years, Ms. DeCora had three daughters and got divorced. She went back to school in 1977, and in 1981, received an associates degree in nursing from the University of South Dakota. All the while, she advocated for Native American causes. She helped form the activist Black Hills Alliance to fight uranium mining in the region and to educate communities about the dangers of mineral development. She co-founded the Dakota Women of All Red Nations, a grassroots Indian women's organization focused on solutions to current threats to the health and wellness of Indian people through education. She co-founded the AIDS Resource Team, a grassroots and family-centered AIDS education group (the only community AIDS education group in South Dakota at the time). She helped form the International Indian Treaty Council, the Voice of the Indigenous People as a non-governmental organization in the international community, which operates through the United Nations. She involved herself in the formation and development of the first and only independent American Indian Radio Station (KILI Radio, Porcupine, S.D.).

But it was always health care—for Native Americans, by Native Americans—that was closest to her heart. Living in Porcupine, one of nine districts of the Pine Ridge Reservation, she and other residents had to travel 26 miles each way to the Indian Health Services (IHS) Hospital, where there was only one doctor for every 89 patients. For the community's non-Native American residents, the travel burden was even greater, since the IHS hospital did not serve them. At a 1980 monthly meeting of the Brotherhood Community, one of six tribally recognized villages in Porcupine District, Pine Ridge Reservation (the others are Butte, Church Creek or Knife Chief, Evergreen, Rocky Ford, and Obalye Communities) Ms. DeCora suggested that the residents build their own clinic right there in the district. It seemed to be a radical, almost unthinkable suggestion, presented as it was to a people who were used to living in a "welfare state," where everything was provided for them from outside, in paternalistic fashion (and often none too well). The reaction to Ms. DeCora's suggestion surprised her. "Well, let's do it, then," she recalls them saying.

No one realized then what building and maintaining a clinic would involve—least of all Ms. DeCora. First, there was the question of funds. Luckily, through her involvement in the Black Hills Alliance, Ms. DeCora had contacts with the SEVA Foundation, a small international public health foundation founded by Ram Das, spiritual pilgrim and author of Be Here Now and many other books, and Wavy Gravy, the '60s Hogfarm community activist and famous emcee of the original Woodstock Festival. Although clinical care was not really in their purview, they saw a chance to help, and gave Ms. DeCora $1,500 to get the project started. "Every community member looked at the check as it was passed around," she remembers, "and then one elderly lady said, 'Okay, now we can build our clinic.' And in their minds, the [SEVA] funders were thinking, 'Boy, these people don't have a clue.' Then, they told us later, they found out that they were the ones that didn't have a clue, because we did build that clinic, starting with that $1,500."

Ms. DeCora's next move was to enlist Wavy Gravy. He convinced several artists to donate their time and talent in a community concert series called "Cowboys for Indians." After three concerts, Ms. DeCora had an additional $40,000 for her building fund. From 1985 to 1987, she served as program developer for the Porcupine Clinic. She secured nonprofit status; implemented policies and operation procedures; got the building built; recruited staff; found living quarters for them; and coordinated the tribe, state, and federal programs to develop a health care delivery system.

Often, what kept Ms. DeCora going in those early years was faith. "I always felt like my work was led by the Creator," she says, "because unbelievable things always happen." As an example, she cites the way in which the MacArthur Foundation became involved in funding the Porcupine Clinic. "They had a site visit going on nearby," she relates, "and happened to drive by. The president of the Foundation saw the building, and said, 'What is that building?' because our building is different—it has passive solar power. When they explained that we were trying to raise money to finish it, the president said, 'Well let's pull over there. I want to see this.' The president was excited by hearing about the struggle and how many years we'd been going and asked us to submit a proposal. We got the money to finish the building and to start a business plan."

While she was working with the community to plan and build the clinic, Ms. DeCora again went back to school, this time graduating with a bachelor's degree in nursing from South Dakota State University in 1986. The clinic operated on a part-time basis from 1989 to 1991. In 1992 it earned, and was granted, state certification as a rural health clinic. The first community-owned and operated clinic on a tribal reservation in the nation had finally opened its doors full-time to the public, serving Native-Americans and non-Native Americans alike. The clinic's services included preventive and primary care, prenatal care, immunizations, and health education.

Having received her BSN degree, in 1987 Ms. DeCora took a full-time job as an R.N. with the IHS hospital in Rosebud, S.D. But her commitment to the Porcupine Clinic did not diminish; she just switched to the role of Administrative Consultant, continuing to monitor, advise, and assist the board of directors in its development strategies for the clinic. When an internal rift paralyzed the board in 1992, causing all funding to be frozen and the clinic to shut its doors, Ms. DeCora took a leave of absence from her job at the hospital. This caused her to lose her IHS-funded housing, so Ms. DeCora moved herself and her children into a trailer, and took over as clinic administrator. She was instrumental in resolving all of the clinic's legal and accounting issues. But it wasn't easy. During this six-month period, she had to travel nearly 200 miles per day on rural roads to and from the clinic, often in treacherous winter driving conditions. Members of an anti-clinic faction also periodically harassed her; and she was a single parent to three teenage daughters (one of whom was seriously ill at the time). When the clinic was re-opened (with an Oglala administrator), Ms. DeCora was able to return to her previous job at the hospital, and to her function as the clinic's administrative consultant, a position she still holds.

In 1993, Ms. DeCora's work came to the attention of The Robert Wood Johnson Foundation. She was chosen to receive the Robert Wood Johnson Community Health Leadership Award, one of 10 recipients in the award program's first year. The award came with a $100,000 stipend, and national recognition for Ms. DeCora's vision and for the Porcupine Clinic. Ms. DeCora used $30,000 of the stipend to help inaugurate a direct-mail funding effort, which has provided the clinic with $30,000–$40,000 in funds annually ever since, helping it stay self-sufficient. The remaining award money went toward the purchase and outfitting of an on-site modular home for clinic staff. Ms. DeCora also was able to draw on the experiences of the other award winners to help her clinic adjust to the change to managed care that was sweeping the country. Today, Porcupine Clinic is a thriving example of community-run health care, and a model for similar efforts across the country.

As for Ms. DeCora herself, she has continued to serve as consultant to the clinic. But since 1993, her vision has taken her elsewhere. While working at the IHS hospital in Rosebud, she began to notice that there was a pandemic of diabetes and its related illnesses among Rosebud's Native-American population. (Diabetes strikes Native Americans at a rate 20 times greater than it strikes other Americans.) She began searching for ways to counteract this unseen but critical threat.

"I was dying inside, because at the hospital I didn't feel like I was using my potential to really make some long-term difference. I felt like my time at IHS was spent applying Band-Aids and really not getting to the root problem of the disease, which I believed then, and I believe now, will render us extinct as a people by the middle of the next century if we don't come up with creative ways to combat it," Ms. DeCora says. For Ms. DeCora, the answers to diabetes, as to other social ills among her people, lay in their traditions.

With help once again from the SEVA Foundation, as well as partnerships with affected tribal councils, in 1994 Ms. DeCora began Diabetes Wellness: American Indian Talking Circles, at Pine Ridge and three other reservations. These talking circles—consisting of 10 to 20 people gathering together through a cycle of 12 meetings—followed the model of Native American talking circles to address the diabetes pandemic through self-education and prevention. With the help of a facilitator, participants teach each other, and learn from each other—how to change their diet and lifestyles by reading labels, changing the foods they choose and the way they prepare them, and increasing physical activity. A Native American with a research background soon joined Ms. DeCora, and together they secured research funding from the National Institutes of Health and other sources to analyze and measure the results of the talking circles. The research, which is central to the talking circles model, will continue for another year and a half, to see whether the changes become permanent, but initial results are encouraging. "So far," Ms. DeCora says, "pretty much everybody involved loses weight and changes the way they're eating."

Since 1996, Ms. DeCora has been living in Winnebago, Neb., devoting herself full-time to the talking circles project. But her involvement with the Porcupine Clinic continues, and she is also involved in several other projects. "We have what's called a Wellness Coalition," she says, "and through that effort we founded a wellness center in our tribal building here in Winnebago. We have after-school programs for the kids, to promote activity and exercise and diet knowledge. It's become very successful in the community. And we have a garden project. We've got 110 families back to planting again, because the Winnebago people are a planting people. And we just had a ground-breaking ceremony for our new hospital here."

Ms. DeCora's plans for the future include replicating her diabetes efforts, as well as continuing to advocate for Native-American health on a self-sufficiency model. "We're not done collecting the data, but I know that it [talking circles] works," she says. "So the next point is, once we're done with the research, how do we share it? How do we help other tribes?" Ms. DeCora now serves on the Indian Workgroup for the federal National Diabetes Education Program (NDEP), a joint initiative of the National Institutes of Health's and the Centers for Disease Control and Prevention's Diabetes Divisions. She was also elected to the National Diabetes Prevention Center's board. An NDEP film, Five Communities Reach Out, features her work with the talking circles.

To Lorelei DeCora, leadership is no mystery. "I think anybody can do any of these things," she says. "But a leader is only a leader if you've got somebody following you. You've got to have the strong will of the people, or it isn't gonna happen. What a leader is, is just speaking to the need, and a way to do it. But it's really the will of the people that makes it happen."

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