TAKETO KATO, WRITING IN THE ASAHI SHIMBUN, MAY 10, 2006
The innocent Shiranui Sea sits out there shimmering in the warm spring sunshine. The briny waters and the sea bed are filled with life and procreation. On the shore, new leaves are shooting from the trees, while wild flowers carpet the ground. The way this land welcomes the new season with such beauty and abundance never fails to impress me.
May 1 marked the 50th anniversary of official recognition of the disease later known as Minamata disease–the sometimes fatal neurological disorder caused by mercury poisoning. Half a century later, there are still many issues that lie unsolved.
Looking back on the history of the disease, finding congenital Minamata disease patients was an alarming discovery that had the potential to virtually overturn the history of humanity.
Prior to Minamata disease, it was widely believed that poisons were not passed through the mother’s placenta; the placenta played the role of a barrier effectively protecting the womb and the fetus within. Thus the very existence of fetal-type Minamata disease patients who were poisoned in utero became a warning message for the future of humanity, a threat to humanity’s very existence. Yet, the whole picture as to the devastation of the disease has not been clarified.
I opened a vocational training center “Hottohausu” in Minamata, Kumamoto Prefecture, eight years ago. Here I can be with fetal-type Minamata disease patients and work side by side with them. I have been listening to the needs of the Minamata disease patients, trying to find what kind of support measures and medical and nursing care they really want.
To that end I have been conducting interviews with patients to come up with a realistic picture of the status quo, and to present a regional welfare model that will fill in the gaps that remain unprovided for by conventional welfare measures.
Fetal-type Minamata disease patients are now in their forties to fifties. Compared to healthy people, their bodily functions are diminishing at an alarming speed, almost unthinkable in a regular aging process. In many patient families, the fathers have already died. The mothers are mostly over 70 years old. Support measures for patients who will soon be left without their care-giving parents have to be set up immediately.
After completing nine years of compulsory education, many Minamata disease patients were left in limbo. There was no support system that would allow them to interact with society. Victims struck down by disorders affecting the whole body, were left to the care of their aging family members, tied to their own homes, in semi-isolation within their local community.
The families are tired from the constant care. They are surely at the end of their tether.
It is not that there are no welfare facilities in the community. However, consider a backdrop wrought with prejudice and discrimination, making it extremely difficult to sustain a relationship built on trust. And if Minamata disease families feel they cannot rely upon and work with such specialist facilities, that is proof of how deep and convoluted the Minamata disease problem is.
My interviews were conducted under extremely trying circumstances. Many patients were reluctant to even reveal that they were afflicted with Minamata disease. After 50 years, there are still parents who have never told their children that they are patients.
Revitalization measures for regions that were polluted by the mercury waste have been implemented to some extent. But authorities, central and local, have done little to promote social welfare of the victims.
The harsh reality that surrounds fetal-type Minamata disease patients 50 years from the official recognition is enough evidence of the glaring lack of support. Actually, it is an issue that can be shared for all people with disabilities who live in the community. Basically the measures should aim at creating a system where patients can continue to live in their local neighborhood and stay connected to the people, supported by a network of patient-friendly community. The social requirements should fit well with a community welfare system.
Specifically, I propose creating a place where anyone can stop by for a visit, or stay the night, any time when there is the need. The place must have someone who can act as confidante, and talk with visitors at all times.
Group homes are good, too. They can serve as places for work and other creative activities; a place where patients can spend time with their friends and people from the local community, as well as a place for living. It is also necessary to dispatch nurses and helpers to individual homes, on a regular basis so they become friendly faces.
Family members worn out from ceaseless care need time to unwind. I hope to see many facilities, multi-functional but small, opening up in the community.
The government must take action now. It is time to make use of the knowledge garnered from the Minamata disease disaster and pour its efforts into putting together an advanced social welfare system that serves the region and serves as a model for other communities to follow.