Asian American and Pacific Islander, or AAPI, is a broad term that attempts to capture an enormous array of communities, comprised of millions of individuals. AAPI refers to not only the entire Asian continent — which alone has 49 countries — as well as the many islands within the Pacific Islands of Melanesia, Micronesia, and Polynesia. It’s an imperfect term, at best. Jenny Chiang, senior state advocacy manager at Community Catalyst’s Center for Community Engagement in Health Innovation, shares her perspective on why we must center AAPI communities in the fight for health justice, how data capture can better serve the nuances and diversity of AAPI communities to reflect their health needs and desires, and why mis- or under-representation of AAPI communities in media and other public forums is a matter of public health. Some of the questions have been edited for brevity and clarity.
Why is it important to center the AAPI communities in the fight for health justice?
Centering the experiences of AAPI communities is critical for our society to achieve race equity and health justice. The AAPI community is often still invisible when it comes to conversations about health justice, with 65 percent of White Americans viewing AAPI communities closer in relation to White Americans rather than people of color and only 22 percent of Asian Americans that feel they belong in the United States. Incorporating the voices and experiences of AAPI communities in conversations on health justice helps move us forward to building stronger interracial solidarity and helps us move away from the perception that AAPI communities are the model minority and not in need of resources.
Growing up as a second generation Asian American, I rarely saw my experiences reflected in the media or spoken about in advocacy movements. I felt that I was not provided opportunities to learn about advocacy nor see myself as someone who could ever make a difference in the health justice movement. My family was never aware of their right to an interpreter/translator from hospitals and I grew up to become the language/cultural broker for my family. I distinctly remember being a high school student and driving to the hospital after school one day to help my grandfather translate after being told my grandmother had suffered a stroke. Unfortunately, I was forced by the doctor to inform my grandfather that my grandmother had a blood clot in her brain and was never going to come out of a coma. Traumatic experiences like this should never be forced upon anyone. I believe highlighting experiences like this helps us understand the nuances that the AAPI community confronts and encourages voices from the AAPI diaspora to share their own stories to develop informed policy recommendations.
We know that, today, medical debt affects 41 percent of adults in the U.S. Can you talk about how medical debt impacts AAPI communities, and the role that stigma and cultural norms play?
While medical debt data for AAPI communities often reflects an insignificant proportion in comparison to other racial demographics, anecdotal evidence suggests otherwise. External factors such as insurance coverage, socioeconomic status, and education, which we already understand are disparate within ethnic groups of this community, are contributors to medical debt. Additionally, most AAPI communities are collectivistic cultures that place greater emphasis on the perception of a group rather than an individual. Conversely, it introduces a cultural clash with American society placing greater emphasis on individualistic culture. In many AAPI families admitting that someone has any type of debt can be seen as shameful, and there remains strong cultural obligations to keep any negativity within the family. There is also a strong cultural norm to associate self-value with the ability to care for one’s own family. For example, although many AAPI families face a long history of intergenerational trauma and racial discrimination, AAPI individuals are highly discouraged from seeking mental health treatment as it may be seen as shameful and/or due to faults on how the family is raised.
Additionally, although hospitals are obligated to provide financial assistance to households with low incomes, there is often stigma associated with accepting charity care. Instead of utilizing public assistance programs such as financial assistance for medical bills, many turn to family to borrow money and opt to work overtime; many also opt for medical care in their country of origin due to fear of medical bills and lack of culturally competent providers in the United States.
To put some of the cost into perspective: an uninsured student studying abroad in Taiwan, a country with a national health care system, paid only $80 USD for an emergency room visit for the stomach flu where he received IV fluids, multiple lab tests and prescription medicine. A C-section costs $15,034 on average in the US, compared to about $1,404 in Taiwan, $7K in the UK and $5,300 in the Netherlands. The unreasonable costs associated with health care is a uniquely American issue.
My parents never had health insurance coverage and would often resort to getting health checkups when they visited my extended family in Taiwan. My parents refused to see a doctor in America citing that the health care system here was a scam — and would instead visit an herbalist who spoke the same language for any health-related issues. They worked long hours seven days a week in the restaurant industry, and were not provided opportunities to learn about their health care rights. Stories like this are far too familiar within the AAPI community but are never captured in research studies. While available data shows us one perception of how medical debt impacts the AAPI community, additional resources need to be invested in local community-based organizations to address a longstanding need for linguistically and culturally sensitive research strategies. For example, a coalition of AAPI-led organizations in Massachusetts, Asian CARES (Center for Addressing Research, Education, and Services), led a community-based participatory research project on the impact of problem gambling in Massachusetts’ Asian communities. Problem gambling presents a unique issue within AAPI communities, as there is very little research available to justify a need for culturally sensitive prevention and intervention strategies. However, casino buses are often stationed in heavily populated AAPI communities, many offering free meal vouchers and Asian specific games within the casinos. The Asian CARES project interviewed community members that had built trusted relationships with the AAPI-led organizations through bilingual/bicultural staff and utilized interview materials translated into Chinese, Vietnamese, Khmer, and Korean.
Your work in research/deep experience in people-centered health policy inspires this next question. How does data collection help or hurt AAPI communities, and how can we try and change that?
Adequate data collection is critical to ensuring community-based organizations serving AAPI communities have the resources and capacity to address health disparities. The Asian Diaspora is a vast community with unique ethnicities, languages, cultural values, sociopolitical histories and resettlement journeys. Multiple factors can largely influence the health outcomes of an ethnic community. However, data for the AAPI community is often reflected as an aggregate under one racial group. I have reviewed countless studies that do not even include Asians as a category due to insufficient data collection. These practices obscure the reality AAPI communities face and work against advocates that uplift anecdotal experiences of inequity. Aggregated data further perpetuates stereotypical views that Asians are the model minority, a sociological myth that historically pits Asians against other communities of color and reinforces unreasonable standards for the AAPI community. In order to achieve data justice, there needs to be intentional efforts to disaggregate racial data and review of data collection methodologies on a systemic level.
Data is a driver for advocacy efforts, and without adequate data, funders are often unable to justify the need for providing monetary resources. At Community Catalyst, I have been able to educate my own team on how data for certain communities may be skewed, and that our outreach efforts should be tailored to better understand how affordable health care might impact the AAPI community.
What AAPI-led organization or individual inspires you and why?
An AAPI-led organization that inspires me is the Asian Task Force Against Domestic Violence (ATASK) in Boston. I had the privilege of interning with the organization a few years ago and highly admired the dedication of the staff to the community. They are a non-profit statewide serving organization that aims to help victims of Asian descent navigate domestic violence situations. The organization provides multilingual individualized support to help families find safe shelter, guide them through the legal process and public benefit options, and educates/empowers victims to regain their sense of independence and self-confidence. The organization has diverse staff that provide culturally competent services most mainstream human service agencies may not be attune to provide. In addition to providing services to community members, ATASK collaborates with community-based organizations across the state to uplift voices from the AAPI community and educate policymakers on a multitude of issues that impact the community, such as the ongoing gentrification of Chinatown, the devastating impacts of problem gambling and the need for disaggregated data.
While AAPI Heritage Month takes place in May, supporting AAPI communities should not be contained within a single month. Achieving race equity and health justice requires us all to continue uplifting community voices, investing in local communities, collaborating with diverse leaders, and supporting data justice efforts. I encourage colleagues as well as advocates to connect/learn from AAPI leaders and community members on the reality of health injustice throughout these communities. Embracing cultural humility is essential for health justice advocates to fight for ethnically inclusive policy protections.
This perspective is the first in a series of interviews we’re conducting to better understand and reflect the lived experiences of people from systemically and historically excluded communities. We are grateful to our colleague Jenny for lending her expertise in people-centered health policy in addition to her candor about her lived experience as a second generation Asian American.