Saving Face and Saving Lives in the Bay Area’s Asian and Pacific Islander Community
For many Asian and Pacific Islanders (API) in the Bay Area, the fight against HIV/AIDS awareness and testing is complicated by stigma and the need to "save face," or protect families from perceived public disgrace. Groups like San Francisco’s Asian & Pacific Islander Wellness Center and Silicon Valley’s Asian Americans for Community Involvement help battle stigma and increase HIV testing among APIs.
"Saving face is not a negative cultural trait, but an embodiment of our respect for family and community," said APIWC’s Community Development Director Lina Sheth. "We have to work within our culture to redefine the concept, to show that talking about sex and HIV is actually protecting the needs of the group. This shift requires courage, strength and compassion."
The API cultural concept of "saving face" contributes to lack of discussion and action in this community regarding drug use, sexuality and sexually transmitted infections like HIV. APIWC reports that 1 in 3 API people who are living with HIV don’t know it, likely due to fear about personal information that testing might expose. Once HIV status is known, families might shun, isolate or discriminate against an HIV-positive relative.
"When I was diagnosed with HIV, my mother wanted me to come home so she could take care of me. At first, I was relieved, but I soon realized that ’taking care of me’ really meant she wanted to keep me hidden. She wanted to sweep me and the shame of my HIV status under the rug," said Henry, an APIWC client.
This harmful side of "saving face" can increase HIV risk and manifestation, because shame could keep people from testing and treatment. Fear and secrecy can cause depression, which might lead to further unsafe behaviors. Plus, APIWC’s Dr. Tri Do cautioned, "We know that psychological stress hastens HIV progression."
APIWC reports that nearly two-thirds of Asians, and more than 70 percent of Native Hawaiians and other Pacific Islanders, have never been tested for HIV. The Centers for Disease Control and Prevention (CDC) said that the number of APIs living with AIDS has risen about 10 percent.
"APIs are often tested very late in the development of their disease, most likely due to stigma," Sheth added, noting that healthcare providers and systems must begin to address this additional cultural component in diagnosis and treatment.
To this end, APIWC and the Asian and Pacific Islander American Health Forum (APIAHF), with offices in San Francisco and Washington, D.C., have contributed material to "BESAFE: A Cultural Competency Model for Asians and Pacific Islanders." Produced by the National Minority AIDS Education and Training Center at the Howard University College of Medicine in 2009, the online PDF document is an API cultural sensitivity resource for HIV/AIDS care providers.
"However, additional resources are needed," said APIAHF’s V.P. of Community Strategies Ed Tepporn.
HIV rates in the API population have also been statistically ambiguous. The number of cases may be unreliable due to underreporting, and states like California, with large API populations, are not included in current CDC HIV/AIDS data sets, which lumps the group under "other."
"For 30 years, API advocates have been asking not to be classified as ’other,’" said Sheth. "So the CDC is now developing a multi-disease narrative for specific ethnic groups, which is exactly what communities need to build better prevention and public health responses."
The Banyan Tree Project is "Taking Root"
In addition to their Tenderloin neighborhood-based organization providing health services, education and research, APIWC, now in its 25th year, also created The Banyan Tree Project, "Rooted in Acceptance," as a national social marketing program to combat cultural shame.
Banyan Tree includes a digital storytelling initiative called "Taking Root: Our Stories, Our Community," which address stigmatized beliefs and attitudes that are meshed with prejudice and emotion.
"The shortest distance between two hearts is a story," said Sheth. "You can’t listen to the hearts of these storytellers, these painful and honest personal narratives, and refuse to question your beliefs. The power of these individual stories is inspiring."
"Taking Root" is a long-term project that offers three-day intensive workshops to empower and teach storytellers how to create two- to four-minute personal narrative videos with voiceovers, video and audio clips. The produced work is unfiltered, and storytellers decide how much they want to share. Non-English speakers can share stories in their native tongues.
The group plans to have about 60 stories produced by the end of 2013, created out of their free workshops. In the Bay Area, trainings have been held at Berkeley’s Center for Digital Storytelling. Additional storytelling workshops will be held on Guam from November 16-18, in Honolulu and Atlanta in spring 2013, and in New York City next summer. Together, these stories will create a meta-story of HIV in the API community, a truthful narrative to combat the monolithic notion of a "model minority."