By Marnette Federis
While Asian-American and Pacific Islanders have very low rates of HIV infection -- in the single digits -- they had the highest rate of increase in new HIV infections between 2001 and 2008. While other ethnic groups had declining infection rates, Asian-Americans and Pacific Islanders experienced a 4.4 percent increase.
What’s more alarming to many advocates is the low testing rates within the community. Less than one-third of Asian-Americans and less than half of Pacific Islanders have been tested for HIV. Experts estimate that many who have the virus delay getting tested. If they don't get tested, they cannot be treated, potentially shortening their lives.
One reason why people do not get tested is the fear and stigma that surrounds HIV. For many Asian-Americans and Pacific Islanders, the topics of sex and sexually transmitted diseases are taboo. The burden of shaming one’s family and misconceptions about the disease are high, according to Cecilia Chung, newly appointed San Francisco Health Commissioner and noted advocate for HIV awareness.
“They still have … stereotypes about people living with HIV,” said Chung. “There are surveys where people think that people with HIV should not work at restaurants. ... That’s pretty significant.” In addition, advocates say Asian American and Pacific Islander communities have been overlooked in national HIV/AIDS awareness campaigns.
Community-driven projects aimed at reducing stigma will encourage people to break their silence and help normalize the subject, said Chung.
Taking Root: Our Stories, Our Community is one of those projects. It's part of a national initiative to get Asian Americans and Pacific Islanders to start talking about how HIV is affecting the community.
Taking Root recently gathered six HIV-positive people in the Bay Area in a three-day workshop where they focused on one aspect of their HIV. Then they produced short videos about their experiences.
Henry Ocampo's is a gay man who told of his diagnosis at age 23 and his initial fear of telling his overachieving Filipino-American family. He created a powerful video and says he wants to send a message to those living with HIV who might be hiding their status.
“I'm hoping that when people hear our stories, even though some of it is really deep, really personal, kind of depressing,” said Ocampo, they will see "that there is hope.”
Participants of the workshop came from diverse backgrounds and tackled the theme of stigma in various ways.
One 28-year-old Japanese-American woman known as “Hatsume,” contracted the virus from a boy she met while studying abroad during her college years. She tells the story of being unable to share with close college friends her status for fear of being blamed and labeled “a slut."
All women fight against the stereotypes of the virgin and the whore, said Hatsume, who did not want to use her real name.
“For Asian and Pacific Islander [women], that’s even more magnified,” she said. “That interferes with a woman’s subconscious … and makes it harder to negotiate in relationships, to ask for a condom, to talk about sex or about getting tested.”
Participants described the workshop as intense. The first day was devoted to solely talking about their individual experiences and they were encouraged to examine deeply personal feelings and memories.
The process was therapeutic, according to Hatsume, though she said she has yet to disclose her status to certain individuals in her life.
Taking Root organizers plan to take the audio storytelling workshops on the road to other places in the Bay Area. Future interviews will not only incorporate stories from HIV patients but also from family members, friends and those who know or care for someone living with the virus.