Minamata Disease at 50: Death, despair, discrimination continue
By Hirano Keiji
MINAMATA, Kumamoto Pref. (Kyodo) Kaneko Sumiko, 74, hopes to outlive, even by a day, her 50-year-old son, Yuji, who has been in a wheelchair the past nine years.
"His condition is getting worse, and now even we family members do not understand what he says or wants," she said of her third son, who suffers congenital Minamata disease. "He must feel miserable that he cannot express his feelings to people, while I myself have had sleepless nights thinking about him."
Her oldest son has also been diagnosed with the mercury-poisoning disease, while her second son died just 29 days after birth. She was recognized as a patient in 1972.
Kaneko, who lost her husband to the disease at age 25, has talked of her hardships to visitors, mainly children, at the Minamata Disease Municipal Museum in the city of Minamata, Kumamoto Prefecture, several times a month since 2002.
A promenade along Minamata bay includes guardian Buddhist deities
handmade by relatives of Minamata disease victims.
"I want young people to learn something from my experiences so they can live in peace," she said.
The suffering by Kaneko and her family illustrates that the tragedy continues at a time when the 50th anniversary of the disease's official recognition is marked in May.
On May 1, 1956, a local public health center received a report about four people suffering an unexplained brain malady, termed merely "a strange disease." The old Economic Planning Agency had just proudly declared the end of Japan's postwar reconstruction era at the dawn of high economic growth.
It was later found that mercury-laced waste water from a synthetic resin factory in Minamata operated by Chisso Corp. had poisoned fish and caused the disease in humans, which damages the central nervous system.
As of the end of last September, the chemical maker had paid 134 billion yen in compensation to victims.
The disease was later detected in Niigata Prefecture.
At the end of last year, 2,955 people had been recognized as having the disease, of whom 2,002 have died, according to the Environment Ministry.
In October 2004, the Supreme Court held the central government and Kumamoto Prefecture responsible for the spread of the disease, and set a less rigid standard for recognizing victims than the government standard set in 1977, prompting more than 3,500 people to apply for medical support.
A group of unrecognized sufferers also filed a damages suit last October against the central government, Kumamoto Prefecture and Chisso. The number of plaintiffs is expected to reach about 900, according to Sonoda Shoto, a Kumamoto-based lawyer.
The moves show the existence of many latent patients, although no one has been added to the official patient recognition list since December 2000.
"Some patients have hesitated to apply for recognition due to concerns over persistent prejudice against (sufferers of) the disease," Sonoda said. "The central and local governments have meanwhile neglected to conduct group checkups on residents in the mercury-hit areas, leaving the overall figure of sufferers from the disease still undetermined."
It was once believed that Minamata disease was contagious, stirring discrimination against its victims and their families as well as Minamata residents as a whole.
Even a few years ago, Minamata children were jeered at in a swimming pool by kids from another city, who voiced concern they could contract Minamata disease if they swam with them.
"We Minamata citizens have been hesitant to reveal our native place and to face our unhappy history," said Seki Yoichi, vice director of the Minamata disease museum. "But we are now trying to make our city environmentally friendly."
The city is attracting school excursions so young people can learn the importance of environmental protection. Some 50,000 people, 70 percent of them students from elementary to high schools, visit the museum annually, according to Seki.
Talk sessions at the museum by nine narrators, including Kaneko, have helped visitors become aware of the hardships people have gone through and correctly understand the nature of the disease.
Another narrator is 46-year-old disease patient Nagamoto Kenji, who also visits elementary schools in the city regularly with other patients for exchanges with children.
"I feel very glad when children hail me on the street, saying 'Hello, Mr. Nagamoto!' " he said, indicating kids have started to understand the disease and the patients.
The 50th anniversary of the disease's recognition is expected to be an opportunity to promote further reconciliation and to continue efforts to eradicate persistent prejudice against the patients and the city.
The city, prefecture and Environment Ministry have set up a special office in Minamata to prepare for a memorial service on May 1 and other related projects, including symposiums and commemorative publications.
"We are jointly working on these projects with the patients and local people, including Chisso employees, and each project team provides us with occasions for healing," said Yamashita Keiichiro, a senior prefecture official who heads the office, referring to "moyai-naoshi."
"Moyai" basically means mooring a boat and "moyai-naoshi" implies reconstruction of once damaged human relations or creation of mutual understanding.
People are wondering if Prime Minister Junichiro Koizumi will attend the memorial service.
"Minamata disease patients have become victims of the prosperity of Japan. We hope Mr. Koizumi will bow his head in front of the memorial," Yamashita said.
Harada Masazumi, a professor at Kumamoto Gakuen University, said: "Amid the high economic growth after the war, Japan subjected a handful of people who relied on fish to the negative effects. They never enjoyed the fruits brought about by that growth."
Harada, who has been involved in the Minamata issue as a doctor for almost 50 years, has supervised a Minamata Studies course at the university since 2002, in which patients, researchers, lawyers and journalists have given lectures for interdisciplinary studies.
The university's Center for Minamata Studies also now focuses on how to rehabilitate the city.
"Minamata disease is a result of criminal acts by a corporation and the government. The offenders should consider compensation, not relief," Harada said.
Despite her worries over her third son, Kaneko sometimes feels her half-century of hardships has been rewarded.
Kaneko Sumiko discusses her struggle against Minamata Disease
in front of a group of elementary school students
"I had initially been reluctant to talk about my life, but I was encouraged by my three granddaughters, the children of my oldest son," she said.
The granddaughters, now in their 20s, had once shunned news about Minamata disease by switching off the TV or tearing up newspapers, because of their father's suffering. But "they said to me they were sorry for that and asked me to tell my story," Kaneko said.
One of the three has become a nurse, and Kaneko said, "She is very good at taking care of my third son, Yuji."
Journalist Hirano Keiji writes for Kyodo News and other publications.
This article appeared in the Japan Times on February 21, 2006.
Published at Japan Focus on February 22, 2006.