In May, Fellow for Life Leslie Hsu Oh, an award-winning writer, was honored as one of 10 White House Champions of Change for Asian American-Pacific Islander (AAPI) Art and Storytelling. The Champions of Change initiative recognizes Americans who are doing extraordinary work to make positive changes in their communities. As part of the White House festivities marking AAPI Heritage Month, Hsu and her fellow Champions of Change participated in a panel discussion on the importance of storytelling for the AAPI community.
It was a topic tailor made to Oh’s experience growing up in a Chinese American home, where her immigrant parents held fast to the Chinese cultural norm of, as Oh puts it, “not talking about the bad stuff.”
“Pretend everything is fine. Save face. That’s the culture I grew up in,” says Oh. That culture persisted even after both her mother, Auxilia, and younger brother Jon-Jon were diagnosed with hepatitis B in the early 1990s. The illness disproportionately affects the AAPI community. After 18-year-old Jon-Jon died of liver cancer caused by hepatitis B, Auxilia, also a writer and photographer, penned a memoir about her son’s illness and death in which she never mentioned her own hepatitis B diagnosis. After Auxilia succumbed to liver cancer a year after Jon-Jon, Oh’s father promptly sold the family home, remarried and fathered another son. “His way of grieving was to erase what reminded him of Ma Ma and Jon-Jon,” she wrote in 2014. “My Chinese relatives expected me to do the same, continue with my life as if nothing bad had happened.”
Oh, however, could not abide the forced silence. In 1997, several years after hepatitis B destroyed her family, she founded the Hepatitis B Initiative (HBI) as a Boston Schweitzer Fellow and student at Harvard University School of Public Health. Aimed at Boston’s AAPI communities, the initiative provided free hepatitis B screenings and vaccinations and created a model that empowered students to facilitate hepatitis prevention campaigns in their own communities. Oh’s personal story was integral to her work with the initiative.
“Storytelling is critical when you’re working with a culture where silence is enforced,” she says. “In the case of hepatitis B, an easily preventable disease that kills two people each minute, I recognized the importance of telling my story. In the United States, one in 10 Asian Americans is chronically infected with hepatitis B. It is one of the greatest health disparities.”
Sharing her story was especially important given the rampant misinformation and stigma about hepatitis B Oh encountered in the AAPI community. While most Asian Americans contract the disease from mother to child during birth, Oh says the widespread belief that hepatitis B is sexually transmitted causes many to remain silent about their condition because of misguided fears about losing their jobs or being deported. Others simply do not understand the seriousness of their condition or believe there’s no cure and therefore do not want to know if they have the virus or related diseases such as liver cancer or cirrhosis.
“I discovered all these truths only after I shared my story,” says Oh. “People were willing to share their secrets because I shared mine. And the best part: my stories had the power to motivate people to change behaviors.”
Oh has gone on to have an exciting writing and photography career focused on family travel, the natural world and indigenous landscapes, food, writing, art, science, and health and wellness. But she has not stopped telling her personal story, sharing the impact hepatitis B has had on her life in pieces like Between the Lines, named a Notable Essay in 2010 by Best American Essays, and in other publications and speaking venues.
The Hepatitis B Initiative has also thrived. In 2002, Oh and her husband Thomas expanded HBI to the Washington, D.C. area. The organization’s model, which includes a toolkit for raising awareness of hepatitis B in hard-to-reach populations, has been adopted around the country. On October 15, the Hepatitis B Initiative of Washington, DC will host a gala celebration at the Willard Hotel to celebrate its 10 years as a nonprofit (19 years in action).
Hoping to inspire others to find their voice, Oh is now working on a memoir that spans the 14 years after her mother’s death, the founding of HBI, and the revelation of other family secrets she hopes “will inspire others to break silence.”
“Writing not only allows me to bring my loved ones back to life on the page but readers have told me that my story saved their life,” says Oh. “When I share my story, a dialogue begins. An emotional connection is made and this leads to action, whether it is moving on from a loss or seeking medical care. A storyteller has a global reach which can transcend cultures and countries.”
Oh acknowledges, however, that getting her own family to break the silence around hepatitis B remains challenging. Both her and her husband’s family remain unwilling to speak about hepatitis B even privately, she says.
“They would prefer that instead of a memoir, I label what I’m writing fiction. However, I am grateful that they understand what Thomas and I are trying to advocate for through the Hepatitis B Initiative,” says Oh. “And while none of them were present in the audience of the White House Champions of Change event, they have not asked me to remove their names or stories from my memoir.”
We’re delighted that Oh will be joining us for the SPARK! Leadership Conference on Nov. 5 in Boston to lead a panel discussion on using the power of storytelling to effect change.
On the cusp of its 20th anniversary of working to prevent hepatitis B and the diseases it causes, Oh says she is grateful for ASF’s support of HBI in the early years. “The Albert Schweitzer Fellowship provided the infrastructure that allowed the Hepatitis B Initiative to be passed from one Schweitzer Fellow to another in our early years,” says Oh. “Since we were not a nonprofit until 10 years ago, ASF accepted donations on our behalf and also maintained historical knowledge. Given that the organization passed to a different group of Boston Fellows each year back then, the Fellowship served an important role for continuity.”