On Our Way There

The Embracing Our Traditions conference strove to bridge grass-roots efforts and academic research, emphasize patient-centered practices, and unify native peoples across differences to end AIDS
by Chael Needle

Last month, March 21 marked the first annual National Native HIV/AIDS Awareness Day, designated to highlight the particular needs of American Indians, Alaska Natives, and Native Hawaiians in the fight against AIDS. According to the National Native American AIDS Prevention Center, the date was chosen to highlight the change of seasons, a time when many Native cultures in their own unique ways recognize the cycle of life. And spring can often mean rebirth, or cultivation and sustenance, or a look toward the successes of the future. For many, spring means balance, a time when the duration of days and nights return to equal measure and a time when all parts of our selves—physical, emotional, intellectual, and spiritual—awaken to this harmony, a community within ourselves that is intimately related to community with others.

In early May of last spring, the Embracing Our Traditions, Values, and Teachings: Native Peoples of North America Conference encouraged a similar fusion by incorporating practices of inclusiveness, holistic care, and cultural sensitivity throughout its sessions, workshops, and lunch breaks. From feedback received by the organizers, the conference nurtured an environment where, indeed, these practices were honored.

A common sentiment among the nearly 800 presenters and participants from the Sovereign Nations, United States, the Pacific Islands, and Canada who traveled to the Anchorage, Alaska, conference site, was that “if we could feel this welcome at home, at all times, what a great world it could be,” says Rick Haverkate, Embracing’s cochair as well as chair of the conference’s national planning committee, which collaborated with the NIH’s Office of AIDS Research to make this gathering a reality.

Qualitative research, he adds, shows us that “when people feel welcomed and a vibrant part of the circle of life then they are much more willing to take measures that keep them healthy. And when you break that circle—it dismembers the community. And when you feel dismembered from the community, you don’t take care of yourself.” The conference itself focused on research into stigma, prevention, treatment, and care, and, more specifically, how research can honor the whole person as well as “how partnerships can develop between grass-roots indigenous populations and big research institutions,” says Haverkate, who is also the director of the Health Services Division of the Inter-Tribal Council of Michigan, Inc., and a member of the Sault Ste. Marie Tribe of Chippewa Indians.

Noting that research and reporting methodologies in the past have often been insensitive, Haverkate points to generalizing about health issues like substance use and diabetes, or excluding elders and elected tribal leaders from research practices
as examples.

And though small populations are often deemed “statistically insignificant” and do not attract researchers, the community-
specific data is needed. While the number of HIV/AIDS cases among Native Americans compose less than one percent of the total cases in the U.S., and this number has been underreported some say, the rate is the third highest in the nation, behind African-Americans and Hispanics, when one takes into account population size. Some recent studies have shown that American Indians and Alaska Natives living with HIV/AIDS have been misclassified as a different race or ethnicity, obscuring the breadth of the epidemic.
The research challenges—establishing internal review boards, respecting the need for years of prep time, and building trust, to name a few—can be met successfully, Haverkate says, for those willing to make the commitment. Research is also benefiting from a recent paradigm shift that is seeing community or tribal members who are qualified to be principal investigators complicating, if not doing away completely with, the notion of “outsider” research, he adds.

Everyone who had been on the national planning committee “voiced [that] they felt they had a place at the table...they really felt the research spoke to them, that they were able to provide their voice in having appropriate research done and having it explained in a way that meant something to the people doing the real work at the community level, people who are affected and infected by HIV,” Haverkate notes. “Basically...what we wanted to accomplish was overall an end to HIV. Of course there are many hoops to jump through, but on our way there it was very important for us to bring research in the field of HIV/AIDS, and the various issues of treatment and care, stigma, prevention, all of those things down to the grass-roots level.”

To make someone feel welcome is no small feat, especially when that someone often feels unwelcome in his or her own home because of judgments about one’s sexual orientation and gender identity, ethnicity, or HIV serostatus, but the conference seemingly covered all bases. From Native ceremonies of prayer, singing, and drumming to discussions about ethnic representation in drug trials, from sessions on family support and patient-centered approaches to care to reports on the latest treatment advances, the conference strove for unity and diversity and brought together “professional people working in the medical field, involved in Indian Health Service or with their tribal communities; grass-roots advocates; people living with HIV; family members of people living with HIV; people from other community-based organizations who were doing HIV prevention or care, from AIDS service organizations,” says Tommy Chesbro, who served on the conference’s national planning committee, and who brings with him a résumé of service on the board of directors for the National Minority AIDS Council and the Ethnic Minority Advisory Committee for the National Institutes of Health, Office of AIDS Research, and his current position as vice president of Education for Planned Parenthood of Arkansas and Eastern Oklahoma.

The plenary session, at which Chesbro, who is gay and HIV-positive, was one of four keynote speakers, signaled the diversity and sense of acceptance that was to come. An elder whose friend is HIV-positive, and an HIV researcher spoke, as did a sixteen-year-old Native Hawaiian woman, who wished to remain anonymous but shared her experiences of being HIV-positive publicly for the first time. “We all four spoke and then sat in a sort of semicircle on-stage and bantered back and forth questions relating to the comments we had made in our opening speeches. There were a lot of tears in the audience, a lot of laughter, and a lot of bonding,” says Chesbro.

“Many people think that all Native people are the same and don’t realize we have a huge diversity of cultures and language. Although we have some similarities, we’re not all the same,” reminds Chesbro, who is Cherokee Lumbee. “To bring us together as one, to unify us in this fight against HIV and AIDS—I think we, at least with the people at the conference, accomplished that so that we can speak in a more unified voice for our needs in dealing with HIV prevention and care.”

Identifying those needs depends on a sustained awareness of HIV/AIDS, a health issue that often becomes overshadowed and underfunded, or even cut from funding in communities that are busy fighting other illnesses like diabetes and heart disease, says Chesbro. And Haverkate, who has worked in the public health field for over twenty years, limns the tenuous relationship between funding and need. “We have very, very small pots of money here in Michigan dealing with Native Americans and HIV. For twelve tribes, 125,000 people, our budget is $7,500. Less than a few pennies per person. It’s declined drastically. We were getting some money from the Department of Education for a while, some CDC dollars, now we get small pots of money from the National Native American AIDS Prevention Center. But HIV money is very, very difficult to come by these days, as well as a lot of public health dollars.”

“We’re a minority population,” Chesbro says about Native people in general, “often disenfranchised, many times [we] have difficulty accessing healthcare or accessing health information, many times people are living in poverty, and all of those things have negative effects toward healthy physical outcomes for individuals.” He continues: “When we speak specifically about HIV, I think we have to continue to work together in a unified voice that we are, at least in this situation, one people working together, instead of the many hundreds of different tribes each trying to get their own little piece of the pie....And to continue to try to break down those walls of stigma and prejudice associated with the disease because they still have a huge impact on whether people even go to a community [site] to learn anything, because people are afraid if they show up to the information session that people will think something about them, or they won’t get a test they’re afraid people will think negative about them. And some people won’t even go into care for those reasons.”

Stigma associated with sex and sexual orientation is also often to blame. “Many communities and tribes who may have at one time had more communication, and had been able to talk more among themselves about sexual issues, because of colonization and assimilation into the larger more dominant culture in the United States, where those issues are more of a taboo, have adopted some of those feelings as well,” notes Chesbro.

Mattee Jim, who also served on the national planning committee, representing the Native transgender community, and worked on selecting and granting travel scholarships (150 in all) alongside Chesbro, is not HIV-positive but has seen firsthand how stigma fueled by transphobia and homophobia can impact families and communities. As a health educator and outreach worker at Navajo AIDS Network in Gallup, New Mexico, she has worked to provide supportive services to the Native MSM/transgender community of which she is a part. Several workshops at Embracing Our Traditions spotlit transgender issues, including HIV risk cofactors such as prostitution, domestic violence, hormone needle sharing, and substance use, among other issues, she was pleased to report.

Substance use often deters MSMs and transgenders from attending prevention events. “There are still times when...some people ask if there’s going to be alcohol there. If not I’m not going. Most of the MSM/transgender community believe that alcohol has to be part of getting together and having fun.…I was a substance abuser for a long time and kind of fell into that when I was younger. The older generation was telling me that getting drunk, and getting laid and partying was part of gay life. But when I got sober I found out it wasn’t. So a lot of that past experience has influenced me in my work, trying to be a mentor to the younger generation [and expressing] that that’s not part of gay life. There’s a whole spectrum out there that you can do—you can work, get an education.”

Mattee Jim suggests that prevention efforts could benefit from the message embedded in the conference title. “We need to embrace our traditions, the cultural teachings and talking about our values and what our traditions teach us, what the old ways are teaching and what we might be losing....” She advocates “going to the elder community and teaching them about HIV and AIDS and having them go out and teaching the younger generation about HIV and AIDS, talking about traditional stories, and that incorporates self-respect and self-worth and how you value yourself, and that way you won’t get into trouble and participate in behaviors that might put you at risk for HIV and STDs.”

The conference did not wear out its welcome—in fact, the conference organizers extended it by one day for more in-depth workshops and many stayed on for those. “I tried as the cochair and the emcee to unify all of us as human beings. And I didn’t stop at those who are considered indigenous to North America,” says Rick Haverkate. “Our traditions as indigenous Native people mean that we have to honor everyone, even outside of our native villages. Our traditions, our teachings, tell us that there’s a place for everyone. And so I had the people who are non-Native at the [opening] meeting stand up and be honored for all the dedication and hard work they provide to our communities. And they felt so welcomed by the round of applause they received. It wasn’t just about Native people taking care of Native people; we know that we can’t do this alone. We’re all in this together, and our traditions teach us that.”

Chael Needle is Managing Editor of A&U.

April 2007