Raising Awareness Around the World
By Thomas J. Powell, M.S.W., Ph.D., Mei-Fu Sheng, M.S.W. and Frank Tsen-Yung Wang, Ph.D.
The Taiwan Alliance for the Mentally Ill (TAMI), much like NAMI, produces educational and advocacy materials for individuals and family members impacted by mental illness. There are booklets and articles on recovering from mental illness, medications, stigma and advocacy. In all, TAMI offers 16 programs including a singing contest with the winner going to Hong Kong, and a soccer team that competes in the Homeless World Cup.
Across Taiwan, a country with a population of 23 million, there are 25 mental health service associations affiliated with TAMI. In the Taipei area, the capital of Taiwan, we visited three associations affiliated with TAMI. These associations run extensive service programs, including case management, housing, outreach, education, payee services, occupational services and clubhouse programs. Like the U.S., government funding was directed toward community services. But unlike the U.S., mental health professionals, often based in the hospitals, have strong ties to the TAMI programs. The service responsibilities of the TAMI affiliated associations means that policy advocacy often takes a back seat. However, there is a positive tradeoff. Paid staff are often more available over the long-term to pursue a policy oriented mission. While the inclusion of professionals has its tensions, family members and persons with the illness have a substantial role in governance. They make up the board and they have a major say in the employment of a variety of mental health professionals.
At the Life of Heart family run association we met with Professor Chwen-I Lee, Ph.D., a retired legislator, and Myra Jin in a full-service restaurant owned by the association and run by people living with mental illness. They spoke passionately about stigma and the lack of jobs and inadequate support from the government that are often the result of stigma. As a former legislator, and current law professor, Prof. Lee is active on the legislative and advocacy front. He told us, however, it took him a very long time to “come out of the closet,” becoming an advocate only after retirement. Interestingly, both he and Jin felt the developmental disability constituency was doing a better job fighting stigma and that TAMI could learn from them.
In what brought a smile to our faces, both Chwen and Myra spoke of their "sweethearts." In Taiwan, "sweethearts" are much like "loved ones" in the U.S. Myra, a Buddhist, has an innovative answer to stigma. She interprets Buddhism to hold that support for "sweethearts" in this life will result in good karma in future lives. Among Myra's sources of support is NAMI. She attended the NAMI National Convention in Minneapolis. While she had some funding from the Taiwan government she needed to employ her own translator.
Family psychoeducation in Taiwan tends to be based on The Family Link Program (FLP) developed by Dr. Marcus Chiu, a social work professor at the Hong Kong Baptist University. The Taiwan version was further tweaked by Professor Grace Wei of National Taipei University. Professor Marcus notes that while it is not a translation of NAMI's Family-to-Family program, NAMI's program served as a "blueprint" for the Family Link Program. In any event, the "blueprint" would have to be substantially altered to be sensitive to unique Chinese cultural issues.
The largest program we visited was the Taipei Mental Rehabilitation Association and Family Member Fraternity. Over 300 family members, 1,000 individuals living with mental illness and 60 social workers and other mental health professionals attended the event.
We were simply astounded by all that they have accomplished. The first major achievement was an outreach activity in a large attractive general hospital whose inpatient service is a major feeder to the Family Association.
The Family Association met in a dedicated room with a retired nurse coordinator. Ma, a board member, facilitated the group of 13 people on the day we visited. She wisely orchestrated the meeting encouraging some to speak and gently quieting others. The main focus was a couple with a newly hospitalized son. It was easy to see they were riveted by the advice and shared experiences other members offered. One of the participants spoke of her son who, like the new couple’s child, would not accept that he had a mental illness. This woman delivered the hugely comforting "not alone" message and was making headway convincing them that you first had to take care of yourself.
The genius of this meeting seemed to be that it attracted a mix of veteran families to meet with those just encountering mental illness, or at least an episode of it acute enough to require hospitalization. The key to getting new families involved appeared to be their identification with veteran members of the group. We were told they didn't have any trouble getting new families to attend these meetings with the support of the hospital. The atmosphere was heartening. The arrangement is attuned to the Chinese ethic of family care, but also a necessary accommodation to the limited availability of community services.
Perhaps in the future NAMI will reach out to international convention attendees by facilitating arrangements with knowledgeable translators. Knowledgeable in this instance means being sensitive to the cultural differences between east and west and the different attitudes families have toward the care of their ill member. Not to reach out in this direction means a lost opportunity to foster the world-wide movement of individuals and families affected by mental illness.
Mental health is a worldwide issue. It will take a joint effort to ensure individuals with mental illness around the world receive the education, care and support they need.
Thomas J. Powell, a professor at the University of Michigan School of Social Work, and Mei-Fu Sheng, of Washtenaw County Community Support and Treatment Services, are both members of NAMI Washtenaw County (Michigan). Frank Tsen-Yung Wang is a professor of the Graduate Institute of Social Work at National Cheng Chi University in Taipei, Taiwan and a member of TAMI.
If you would like to subscribe to the NAMI e-Advocate, register a free NAMI.org account.