Disease and Discretion

Tracking a taboo illness in Tohono O'odham country

Highway 86 streaks westward through Avra Valley, skirting the Baboquivari Mountains as it enters Tohono O'odham country. From there, this two-lane passes through the tribal capitol of Sells, and then continues back in time.

On the O'odham reservation, you will find modern homes, complete with latter-day accouterments--dishwashers, clothes dryers and plasma TVs. But pick any back road, and you're also likely come across saguaro-rib dwellings rising like ancient apparitions from the desert. It's not rare to glimpse elderly O'odham women still stooped over their open fires, cooking dinner.

Stretching across 2.8 million remote acres of cactus and bluff, O'odham land is a world apart. And that suits many of the reservation's roughly 18,000 residents just fine.

But sometimes, the outside world intrudes anyhow. And when it does, we discover just how different our neighboring cultures can be.

Take syphilis. In April, the Tohono O'odham tribe confirmed an outbreak of the ancient scourge. Since January, 46 cases have been reported, compared to one or two cases in a normal year. It's believed the initial infection came from a town bordering the reservation.

Not that the tribe is alone in this fight. Syphilis has resurged across the United States, with more than 33,000 cases now reported each year. But battling a heavily stigmatized, sexually transmitted disease among the quite modest O'odham requires a particularly delicate touch.

Out here, you won't find explicit billboard warnings against careless sex, or hear radio announcements taking directly about STDs. Like the rangy land they inhabit, the O'odham prefer a round-about approach.

No one knows that better than Robert Price. He's an O'odham, and he works for the federal Indian Health Service as a spokesman and tribal liaison. He's part of a team brainstorming ways to openly confront syphilis--without ruffling too many feathers.

That task is tied directly to the past, Price says, with many reservation residents only three or four generations removed from living very traditional, rustic lives. And by tradition, "the O'odham had very strong social mores, and those mores weren't liberal," he says. Even today, openly discussing taboo topics such as STDs can make folks squirm.

"Socially, the Tohono O'odham are more conservative, and such discussions aren't held in a public venue," he says. Instead, tricky issues are dealt with inside the family. And sometimes, they're not grappled with at all. "People will say, 'My parents didn't talk to me about that, and I'm not going to talk to my children about it, either.'"

Even the native tongue provides a hurdle. "The O'odham have all the advances of modern Western medicine, everything that technology has to offer," Price says. "But we have many O'odham who would prefer--and would certainly be more proficient--dialoguing in the O'odham language."

However, "there's not a lot of existing terminology for a lot of the things that are part of modern technology. So you have to determine a way of expressing--in O'odham--something that's technically accurate. But you also have to present it so that you're not offending the listener, and causing the listener to not listen."

Still, ensuring the health of tribal members means sometimes prodding the comfort zone. That recognition came straight from Ned Norris Jr., the recently elected tribal chairman. "He addressed our core group a couple of weeks ago, and he was very clear," says Price. "He said we had to stretch some barriers, but not break them so inviolably that people are so offended (that) they won't listen to you. You try to do it as modestly as possible."

That means spreading the message of disease prevention in neutral settings such as community meetings, "where no one feels like the light is being shined right on them," he says.

Another approach is staging high-profile events, such as last week's Labor Day concert, featuring the waila-rock band Papago Warrior. The goal was making contact with young adults--teens to 30-year-olds--where the syphilis risk looms largest. "Papago Warrior are the most popular band on the reservation with that age group," Price says. "It was really a venue to do education and do screening in a room off to the side, where we can counsel people and actually do blood draws."

The airwaves provide another potent tool, particularly for reaching the reservation's remote villages. That's critical, since tracking cases in those areas is tough. "Most people have post office boxes rather than addresses," says Alfonso Urquidi, STD program manager with the Arizona Department of Health Services. "And those P.O. boxes are located in Sells. So these cases are assigned to Sells, because it's the only contact information we have."

But even airing public service announcements over tribally owned KOHN-FM requires plenty of gentle euphemisms. Price says KOHN station manager Sial Thonolig recently described reading a syphilis public service announcement on the radio. "Translated into English, it says, 'When you've been with a person--and you know what I'm talking about ... '" Price explains. "Compare that to Tucson, where you would use much more explicit terminology."

The syphilis task force has also retooled its hands-on approach. The objective is encouraging at-risk residents to come in for screening. Once that contact is made, the next step is keeping them in the loop for follow-up monitoring and care.

Each Tuesday, this core group meets for updates and to hash out new approaches for ongoing cases. Team members are drawn from state, county and tribal health departments, along with rotating officials from the U.S. Centers for Disease Control. The Inter Tribal Council of Arizona also plays a strong support role.

The team sticks to a few basics. "Both of our public-health nurses assigned full-time to this are O'odham," Price says. "They live in the community; they're known by community, and there's community confidence in them. The tribal health representatives are also all tribal members who live in the communities, and have served those communities for years."

In rural settlements where every visitor is scrutinized, these nurses purposely blend routine house calls with disease control. "They're out there anyway, doing things like checking on people who've had surgery, to change their dressings," says Price. "So they very discreetly go up to the door. They don't blow the horn and announce to the whole community that they're there."

Dealing with a taboo disease in a traditional culture is no simple task, Price admits. "There's going to be a stigma anywhere. But the O'odham are a little less open about having these things discussed publicly. We need to approach it in a way that doesn't embarrass them, so that they don't just shut the door when we come knocking."