What is it with me, anyway? I blink and I’m a month behind in my updates. I’m not lazy. I’m busy, sure, but still…
Hmm. Anyway, the last two days of our trip to Okayama were spent on an island dedicated to living and medical facilities for persons with Hansen’s disease…
Or, in old-school, non-PC terms, a leper colony.
The story begins years ago, with our host on this trip, Hisako Okamura, and her entaglement in a social justice issue.
Folks with leprosy fall into the category of untouchables here in Japan… including those who traditionally had jobs where bloodletting was involved, like tanners and butchers. They are called, collectively, the “burakumin”. Wikipedia has the background info, and I encourage curious people to read about it there.
A man named Tanigawa wrote an entry for a national poetry contest. He ended up being the winner of Okayama Prefecture, and was invited to go to Tokyo to read his poem to the emperor in person.
Then the emperor’s handlers found out he had leprosy. They refused to let him attend.
Hisako Okamura thought this outrageous, depending as it did on a lot of outdated beliefs (discrimination against the burakumin has been illegal for many years, though of course it still happens- there’s even an underground book that’s been widely circulated to companies indicating family names of people with buraku status, and it’s suspected that it’s still used in hiring decisions at places like Toyota). She waged a long-running campaign to get the decision overturned, and was eventually successful.
The fact that credit for her achievement was stolen by some more photogenic high school students who became media darlings is another story for another time.
In any case, Hisako and her husband Kazu (director of the best hospital in Okayama Prefecture) have remained active in the fight for the rights of people with the disease.
Due to modern multi-drug therapies, Hansen’s is now treatable and controllable and most people who get it are either cured or live normal lives. Those on the island are those unfortunate enough to have contracted the disease before MDTs were available.
The youngest resident on the island is 55, the oldest is 100.
It’s a case where the government treated them like animals for many years, then decided it was easier to throw a whole bunch of money at the problem than try to change opinions. So they gave every person with the disease who faced government discrimination a settlement of $300,000 and gave them a free place to live.
The island is a beautiful place- rocky cliffs overlooking the water, across which, in the very faint distance, you can see the smallest main island of Japan, Shikoku. The bay in between is dotted with green islands and the whole thing looks a lot like a scene from a sumi-e scroll.
Then it gets weird.
The first odd thing is that the island, in such a prime location, is completely underdeveloped (by Japanese standards). The land is fairly level, and seaside, which in most places means a bustling city. But the roads leading toward the island get smaller and smaller and more and more winding, not even showing on a lot of maps. There is only a single bridge, barely two lanes wide, that leads to it.
There are no restaurants within 30 miles of the island. There are no commercial hotels, and only sporadic housing. All large-scale development abruptly stops about five miles away.
Once across the bridge, it’s a different world. It’s a ten-minute drive to the main settlement. On the island are two large hospitals, two nursing schools, administrative buildings, a small grocery store (run by the residents, opens late and closes early) a central power plant, and rows and rows of small, comfortable apartments. Pipes from the power plant (steam heat) snake everywhere. Every car and electric scooter is brand new (I think the government gives the office staff and nurses new cars as well if they agree to work on the island, and the residents are flush from their discrimination settlements). All roads, signs, and guardrails look like they were installed yesterday. Everyone young is wearing a lab coat or smock, everyone old has the disease. Speakers tuned to NHK / the central PA system are located about every fifteen feet along every road and sidewalk, so that the blind can find their way and get their information (many forms of Hansen’s attack the eyes, and there are many here who have lost their sight). There are bath houses, libraries, temples, monuments, all in perfect shape. It looks like a movie set, or a town that aliens built to observe how humans act.
We went there with Hisako one day to visit Mr. Tanigawa. He is elderly and has been greatly affected by the disease. He welcomed us into his comfortable, brand-new two-room assisted-living apartment. The sitting room is Japanese-style, beautifully appointed and full of modifications for Mr. Tanigawa’s condition. The kitchen is Western and opens to a common hallway, a short walk or wheelchair ride from the medical facilities.
Contrary to the many jokes out there, leprosy doesn’t cause your body parts to fall off. What it does is attack the nerves, leading in many forms of the disease to parts becoming useless and shrunken. Mr. Tanigawa’s skin seems slack, like it doesn’t belong to him; the fact is that most of his nerve endings have been destroyed and he has almost no sensation on any part of his body. This is the most dangerous aspect for people with his form of the disease; he can’t tell if he’s burned or otherwise injured himself. Think about how your jaw and lips feel when they’re full of Novocain- it feels like that all over. His lips hang slack and he drools as a result. His eyes are glass. His hands are folded over into little paws and are useless. He activates switches and buttons in his room by pressing them with his nose or jaw.
The tales he tells of the way people with his condition were treated are harrowing. For privacy reasons I’ll have to omit them for now.
After our visit, we toured the monuments (built high on the hills and offering an impressive view) and the (now defunct) museum of the history of the disease in Japan (Hisako has lots of connections). It was a bit musty, the displays covered with dust now, but very interesting and rather harrowing.
If you know someone on the island, you get to stay at the little hotel they have, so we did, as guests of Mr. Tanigawa. It’s basically a Super 8 kind of place, with Japanese touches, plus free laundry, a big bath, the run of a well-stocked kitchen, three squares a day. All totally free.
Walking around at night is eerie. It looks a lot like many other Japanese towns, except there is zero traffic on the streets. It is quiet, except for the speakers that constantly play their NHK, so it seems like you’re never alone, with disembodied voices coming at you from all sides. Many buildings are open at all hours, left unlocked, with the lights on, and no one around. Occasionally, very occasionally, an elderly person will motor silently by on an electric scooter, to be swallowed again by the darkness.
What will happen to the place when the last of the residents die is up in the air. No doubt the history of the place will be hidden and the island will be developed, slowly at first, then faster as the memories begin to fade.
A view from the island. Very peaceful.
The (shuttered) museum of the history of Hansen’s Disease in Japan.
The memorial bell at the summit of the island’s tallest peak.
In town. One of the ever-present speakers (the white cylinder) is on the pole to the left.
One of the many assisted-living apartments on the island.
Looking out into the bay. The wooden platforms in the water are for oyster farming.
One of the thousands of land crabs on the island.
More to come. Thanks for reading!