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Recovering Humanity in South Korea: Nothing About Us Without Us

By Daniel Fisher, M.D., Ph.D.

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Dan Fisher's Presentations on Recovery

I realize from this trip that I travel to learn as much as to teach. The South Korean Commission on Human Rights had asked me to come to teach them what we have learned about recovery. I found that I learned as much about how I understand recovery as I taught. I found that by being with a people of such different language and culture so many miles away, I discovered a deeper meaning to my own life. I found that to recover from mental illness means really to recover one’s humanity at the deepest level. This movement of recovery is growing as our awareness of our common bond and need surpasses the ordinary bounds of daily existence. It indeed feels like a spiritual journey of all of humanity, for I believe that our humanity is linked to the humanity of every other being.

Dinner with South Korean Commission on Human Rights and Geoff Huggins
Dinner with South Korean Commission on Human Rights and Geoff Huggins

Clarence Sundram, President of Mental Disability Rights International, Geoff Huggins, Head of Mental Health for Scotland, and I jetted over the North Pole to South Korea, the week of December 4, 2006. I wondered why I answered the call to speak at their conference on human rights and mental health. What force drew me there on top of an already busy schedule? What force drew me there at a time of heightened tensions between North and South Korea? My mother clearly worried and wanted to be sure I was headed for South not North Korea. Well I soon found out that I went because they needed to hear a new approach. They had not heard about recovery. I went because I was needed. South Korea is still operating the type of institution-based system seen in the United States 40 years ago. Among the glittering skyscrapers and flash of digital cameras I found that people labeled with mental illness are treated as an extreme underclass. Attorney Sundram, with extensive experience in developing countries, was not shocked by the conditions in the hospital we inspected. I was. Our work was cut out for us.

We had a full schedule, which was intensified by the jet lag of 15 hours flying and the language and cultural differences. Our first day began with a brief orientation and introductions at the headquarters of our sponsoring agency, the National Human Rights Commission of Korea. We were then treated to an extensive, though non-fattening meal. Meals were generally an elaborate ritual, with 20 or 30 small, unrecognizable dishes. Many of them were forms of pickled vegetables, called gimchi. (That is also the word they use when smiling for the camera). We then were taken to Yongin Hospital, 30 miles outside of Seoul. The hospital houses 2,200 patients at any time and the average stay is 200 days. We were only shown their better units and I was dismayed by what I saw and learned even there.

Perhaps the greatest abuse is the ease with which people are hospitalized and the difficulty they have in getting out. There is an unfortunate confluence of Korean culture, which is based mostly on the rigid hierarchy of Confucianism and the collusion of a psychiatric profession, which reinforces that social structure. This means that hospitalization can occur when the most powerful member of the family, usually the husband, wants it to. We later met a woman who is bringing the first successful lawsuit against a psychiatrist for improper hospitalization. She has started a group called Human Rights Alliance of Mental Hospital Abuse. She was hospitalized for 65 days because she changed her religion to one her husband did not approve of. On reviewing the meager information in the charts I found that one young man was hospitalized for a year because he yelled at his father. Another had been hospitalized for 90 days for alcoholism. The wards had very little programming, so patients were wandering aimlessly. One unit had over a hundred women, all in pajamas and all clutching at our arms, and plaintively searching for hope in our eyes. Their sleeping quarters consisted of 15 mats crowded together in each room with no space for personal belongings. We also learned that they carry out ECT without anesthesia, a practice that leads to broken bones.

As we drove back from the hospital, Mr. Seok Mo An, the Chief Investigator for the Commission, and I started discussing the translation of the word recovery into Korean. The translator had used the word whe bok which means recuperation. I explained that we wanted a much stronger word that encompassed the totality of a person’s life.  Mr. An came up with in-gan-seong whe bok which means to recover your humanity. This definition was verified by an article by a member of the Sunrising Clubhouse, which we visited later in the day. The member there wrote that he experienced a normal life through recovery of relationships of equality and humanity, thinking of himself positively, and expressing self-determination. The Sunrising Clubhouse is one of the only examples of a rehab program in Seoul and perhaps all of South Korea. It became clear that in addition to an overuse of inpatient facilities, there are inadequate community services and supports. That night we were treated to a genuine sushi Japanese meal. I thought I knew sushi, but this was real sushi, which involved a huge variety of raw fish I had never seen before. I had particular difficulty swallowing raw squid, but did my best to please our host.

The next day was equally filled with further discussions with three of the Commissioners and then dialogue with representatives of professionals, hospitals, families and victims. There was consensus that the conditions in the hospitals were inhumane, that more services were needed in the communities, stigma was very prevalent (for instance being labeled mentally ill often prevented one from getting married). Most agreed that change was needed, yet also agreed that the Commission should not have the authority to bring the changes about. That night we were taken to a famous shopping district and found half the city there as well. We then had a terrific dinner in a restaurant founded by a former Buddhist monk. The all-vegetarian meal consisted of many fresh vegetables, again in dozens of dishes. This was followed by an excellent display of classical Korean dance and drum music.

The next day was the big day of the symposium. Mr. Baek, our organizer nervously escorted us to the Commission offices, ever fearful we would tarry or wander. Four journalists interviewed us. We shared with them our concerns about the state of the Korean system. We went beyond our scheduled time and Mr. Baek was again nervously rushing us on to a meeting with a legislator, Mr. Choon-Jin Kim, who is sympathetic with mental health reform. The parliament building rose up several hundred feet with granite columns on each side. Inside was a central hall, with a highly polished pink marble floor and a rotunda reaching even higher. I was very impressed by the setting and by Mr. Kim’s knowledge. He brought up the story of John Nash as an example that people can recover from even severe mental illnesses. He also wants to find a way to decrease the stigma of mental health issues. He asked us all to remain involved in assisting South Korea in mental health transformation and we promised to do so.

In the afternoon, the symposium was held with about 150 attendees, representing all stakeholder groups. Attorney Sundram led off with a 10-week course on international mental health law compressed into 30 minutes. It was clear that South Korea is violating international mental health rights and he also emphasized the importance of their building up their advocacy groups, as they are often the best catalyst of change. I then gave my talk on recovery. I emphasized the importance of reducing stigma, especially by people telling their story, in person in a variety of settings. I urged them to change their system to one based on the principles of recovery. I ended with a list of recommendations for transforming their system:

  1. Develop a new Mental Health Act with a mission of creating a recovery-oriented, community-based, consumer-driven system.
  2. Launch a government-sponsored Anti-stigma Campaign, based on consumer narratives of recovery especially in person, public service stories of recovery, and agreement by media to not carry stigmatizing images.
  3. Establish tribunals or court proceedings to bring about due process and decrease the influence of families and psychiatrists in hospitalizations (revision of article 24 of Mental Health Act).
  4. Build up community services and supports such as rehabilitation, housing, and crisis services to mediate family problems and prevent hospitalizations.
  5. Train professionals, administrators, families, and consumers in a recovery model approach.
  6. Fund consumer-run advocacy, technical assistance, and support groups to carry out community integration, stigma reduction, consumer participation in policy formation, and training and education of the system.
  7. National Human Rights Commission should employ consumers to develop questionnaires based on recovery and interview consumers in hospitals and in the community to determine the degree to which services recognize their rights and promote recovery.

I wasn’t sure if the Commission really wanted to hear about recovery since their rights issues are so pressing. I was pleased, however, to hear the Secretary General, Nohyun Kwak, in his concluding remarks state that he would like to see their system move to a recovery-based, consumer-driven approach as I had advocated. Then he shared that he was very impressed by the pin I wore on my lapel. It reads, “Nothing about us without us,” which is a unifying principle of our consumer movement. He said he hopes it becomes the motto of their change process in South Korea.

The very best part of my visit came that night at an unscheduled event. The day before I had met representatives from the Human Rights Alliance for Mental Hospital Abuse Victims and I had invited them to get together with me after the symposium. They agreed. Then at the symposium, I met another advocacy group of mental health consumers, the Way of Going Together. The group has 40 members and meets twice a week in meetings that are attended by approximately 15 members. They receive their support from a private foundation and work on their reintegration into the community. We were interested to learn that the two groups were not aware of one another until the open meeting at the Human Rights Commission the previous day. It was also evident that the Human Rights Victims Group was not particularly anxious to involve the second group in our meeting and raised a number of practical objections to a joint meeting.

However, Daniel and I were persistent and we finally arranged to meet at a Korean restaurant near our hotel. They also were eager to meet. At first there was some tension, because the victims’ group said they were never mentally ill, just unjustly locked in a hospital. I urged the groups to work together and find common ground on issues such as ensuring due process around commitment. Then the leader of the consumer group got up and said he wanted to share his life story. It was a story of tragedy and triumph. He said it was the first time he had shared his story in public. We all applauded his courage. He said that by hearing my story he gained the strength to tell his. They shared that they were very happy that all three of us came to dinner with them, because that meant that important people from other countries saw how valuable their stories are. Geoff joined the group and soon suggested that I invite them to join the National Coalition of Consumer/Survivor Organizations I am forming. When I suggested that we link their groups with the Coalition, they cheered and loved the idea. We shared cards which is a very important ritual in Korea. Everyone has a very nice and complete card which they lovingly hand to you with both their hands and a small bow and you are expected to receive it with both hands and an equal bow. Photos are also a required ritual and I am sure no three days in my life have been photographed as completely as those days.

Later at the hotel, Mr. Baek and Mr. An bid me farewell with a lovely gift of a traditional Korean lamp. There were no embraces but I feel a very strong bond has formed between us. I also formed a strong bond with Clarence and Geoff. It took a while to understand Geoff’s humor, but by the last meal I did. I was asking him what a certain liquid might be as I placed it to my lips. Just then he conjectured it was raw squid. I nearly spit it out until I saw the sparkle in his eye and instead burst out laughing.

I truly feel that my humanity expanded greatly with this trip and I hope to bring this news back to our country. More than ever I feel the common bond through our shared humanity. More than ever all around this planet I feel we are sharing our bond of humanity. I hope this will broaden our capacity to live in peace and harmony with each other and all beings on this planet.