Alternatives 2008 - the Largest National Annual Conference of People Diagnosed with Mental Illnesses

Much to my surprise, 100% of the completed film evaluations were favorable of the 33-min rough cut that we showed at this conference. One man from Boston University, Derek Fulker got up and told me that it was brilliant. Many said the film was "powerful." Even the best films get a few negative reviews, but this audience of mostly people diagnosed with mental illnesses were enthusiastic and enamored with our little film. That felt good after receiving so many rejection letters from foundations for funding.

In May, I submitted a workshop proposal entitled "What Are the Issues for Asian American Consumers? Asian Americans Speak." to the National Empowerment Center's Alternatives 2008 conference. Alternatives is the largest annual national conference for people with mental illnesses. It got accepted, but I didn't think we would end up going because we didn't have the funding to go. But the National Association of State Mental Health Program Directors (NASMHPD) stepped up to pay for the travel expenses for me and 2 consumer speakers: Nami Roberts of Los Angeles, and the film subject, Can Truong. Thank goodness. NASMHPD is a $7million organization funded mostly by the government.

I initiated this workshop because there is a gross lack of social activism among Asian Americans on this issue, and to compound the problem, the mainstream consumer movement perceives APIAs as model minorities so they do not see any need for change. The mainstream consumer movement is a wonderful, group of people who have been diagnosed and treated by a psychiatrist, some of whom have been mistreated, locked up, coerced to take medications against their will and suffered numerous adverse side effects from psychotropic meds.

After the workshop, I submitted the following report to NASMHPD per their request.

BRIEF SUMMARY OF WORKSHOP

Walter Shwe, as the lead presenter, moderated the workshop. I spoke as an activist and filmmaker and delved into the reasons why I had begun this film project. I am not a consumer, but I am a family member of a consumer. However, I felt like I was speaking on behalf of the thousands of Asian Americans living with a mental illness who are limited-English proficient (LEP) whose needs sometimes go unaddressed by the English-speaking majority in the mental health establishment. And because a conference like Alternatives is monolingual, it unwittingly, passively excludes many Asian Americans, whose first language is not English.

I was reluctant to speak about my personal experience as a family member of a consumer because my family is not comfortable with my speaking publicly about the mental illness in my family, but I felt it was an important story to tell. In the end, I did feel that telling my grandfather's story was somewhat cathartic to my own personal process and had an important social message to the consumer movement: be aware that LEP people have rights under Title VI of the U.S. Civil Rights Act. The federal government is NOT supposed to discriminate on the basis of national origin.

I had a grandfather with chronic paranoid schizophrenia who lived in a public home for the mentally ill in Richmond, VA. Though he was a limited-English proficient (LEP) naturalized American citizen and was a Medicaid and SSDI recipient which made him eligible for an Korean-English interpreter as guaranteed to him under Title VI of the U.S. Civil Rights Act of 1964, he was not provided one at anytime during his medical treatment for a period of 10 years. He passed away in 2001. He often did not receive the medical attention he needed because of his inability to communicate accurately his bodily sensations to the staff of the home he resided in. His caretakers at the home denied this, perhaps because the search for and the costs of finding an Korean-English interpreter in Richmond, VA was too daunting a task for them to undertake. 

My family essentially abandoned him after a series of hardships taking care of him. His bizarre delusions and inexplicable behaviors profoundly embarrassed my grandmother and jeopardized her reputation in Korean social circles. They divorced and my grandmother did little to provide care for his serious and chronic medical condition after their divorce. Because my grandmother and mother did not understand mental illness, they forbade me and my siblings from having any contact with him. Regardless, my sister and I sought to help him and called him every once in a while.

Though my grandfather did speak some English, he was not able to express the nuances of his thoughts and feelings in great detail in English. He had some English only speaking friends in his home. But sadly, he had no friends with him he could speak Korean with for the last 7 or 8 years of his life. Title VI of the U.S. Civil Rights Act states that the Federal government cannot discriminate on the basis of national origin. Providing services exclusively in English to LEP recipients of federal funding is discrimination and many people do not seem to be aware of that fact. It wasn't until I called the Asian American Legal Defense and Education Fund in New York City, did I find out his rights had been violated. It seems that most lawyers are not aware of the rights of LEP Americans. Most consumers are not. Most mental health directors do not. In that regard, I felt speaking on this issue was important in raising the issues because there are probably thousands of LEP recipients of federal funds who have experienced discrimination.

The purpose of creating this workshop "What Are the Issues for Asian Americans? Asian Americans Speak" was to help create an Asian American presence at Alternatives, the largest annual national conference of people with mental illnesses, where Asian Americans (AA) are grossly underrepresented. Among all the ethnic groups in the U.S., Asian Americans are the least likely to seek treatment for mental illnesses. When AAs do enter the mental health system, they are far more severely decompensated than their non-Asian counterparts according to many studies. This indicates that mental health treatment is often delayed for as long as many years for many AAs with serious and chronic mental illnesses.

The absence of grassroots activism on this issue is a serious detriment for progress in Asian American mental health. Currently, there exists no national movement of Asian American consumers and family members. There are few AAs in the country who are open about their mental illness. The model minority myth, the perception that AAs are socio-economically and academically successful and have few, if any, problems, is pervasive in the consumer movement. This myth is further reinforced by absence and invisibility of Asian Americans at these major consumer events -- supporting a false perception that AAs do not have mental illnesses. The truth is the AAs have about the same rates of mental illnesses as non-Asian groups, but they are far more adept at concealing their mental illnesses due to the harsh stigma that often brands the entire family in traditional Asian cultures and the moral code of family honor that forbids them from publicly disclosing their mental illness. The stereotypes of AAs abound in American popular culture and the consumer movement. There is no counterforce to mitigate the notion that Asian Americans don't have any problems.

The prevalence of these stereotypes and covert, subtle forms of unintentional racism sometimes, but not always, makes it uncomfortable for many AA consumers to attend Alternatives alone without the support of other AAs. Among 749 attendees this year, there were less than 10 AAs (I counted 8, but added 2 as a margin of error. I contacted NEC for exact numbers, but have not yet received a response.) though AAs comprise 4% of the American general population. Our workshop and NASMHPD were responsible for bring 4 of these AAs. Our presence at Alternatives was critical to raising awareness and creating a voice for Asian American consumers.This workshop is the beginning of an effort to create a vocal, cohesive and viable grassroots movement around the issues that confront Asian American consumers, their families, friends and allies. It's not enough to make a film, but also make the ground fertile for a movement to take root and grow. It is my hope that this workshop is one of the seminal gatherings of Asian American consumers to meet and forge bonds so that they can feel empowered to work in their home communities.