A Disability of the Soul

An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan

Karen Nakamura

• Publisher: Cornell University Press
• Year: 2013
• ISBN:
  9780801467981
• Topic: Social Sciences
• Subtopic: Cultural & Social Anthropology
• Index: Social Sciences

"This is a terrific book?moving, clear, and compassionate. It not only illustrates the way psychiatric illness is shaped by culture, but also suggests that social environments can be used to improve the course and outcome of the illness. Well worth reading."
— T. M. Luhrmann, author of Of Two Minds: An Anthropologist looks at American Psychiatry

Bethel House, located in a small fishing village in northern Japan, was founded in 1984 as an intentional community for people with schizophrenia and other psychiatric disorders. Using a unique, community approach to psychosocial recovery, Bethel House focuses as much on social integration as on therapeutic work. As a centerpiece of this approach, Bethel House started its own businesses in order to create employment and socialization opportunities for its residents and to change public attitudes toward the mentally ill, but also quite unintentionally provided a significant boost to the distressed local economy. Through its work programs, communal living, and close relationship between hospital and town, Bethel has been remarkably successful in carefully reintegrating its members into Japanese society. It has become known as a model alternative to long-term institutionalization.

In A Disability of the Soul, Karen Nakamura explores how the members of this unique community struggle with their lives, their illnesses, and the meaning of community. Told through engaging historical narrative, insightful ethnographic vignettes, and compelling life stories, her account of Bethel House depicts its achievements and setbacks, its promises and limitations. A Disability of the Soul is a sensitive and multidimensional portrait of what it means to live with mental illness in contemporary Japan.

CHAPTER ONE

Arrivals

In May of 2005, I stepped off a small diesel train at the town of Urakawa with mixed feelings of hope and trepidation. Like thousands of people before me, I had traveled to this remote fishing village on the northern frontier of Japan in search of what was supposed to be the Holy Land for people with mental illness—a place where they could live, work, and prosper without fear or prejudice. It all sounded too good to be true, especially when contrasted with the utter desolation of the landscape that greeted me when I got off the train. All I could see were abandoned houses and storefronts. This couldn’t possibly be the right place. But right outside the station, a young man with a mustache and glasses waved at me. He was my ride.

Bethel House (Beteru no Ie) was founded in the town of Urakawa in 1984 to help people with severe mental illnesses such as schizophrenia live in the community after being discharged from the long-term psychiatric ward of the Urakawa Red Cross Hospital. From its modest beginnings in a run-down church, Bethel House has grown over the past three decades to become a major nonprofit with over 150 members and supporters and several million yen in annual revenue. Every year, several thousand of “psychotourists” (my coinage) visit Bethel from all across Japan, many to attend the annual Bethel Festival and its Hallucinations and Delusions Grand Prix. In addition, Bethel members, many with quite severe symptoms of schizophrenia and other mental illnesses, lecture all across Japan, talking about their lives and how they have dealt with illness and recovery. They sell not only themselves but also a wide range of products, from books and videos about their lives to T-shirts and aprons festooned with comic representations of their hallucinations and delusions to seaweed and noodles packaged by members in their in-house workshops.

Getting to Bethel

I had been on trains for almost fourteen hours when I arrived at Urakawa Station. I had woken up before dawn to take the first bullet train heading north from Tokyo Station, traveling several hundred kilometers past the city of Sendai to the town of Hachinohe on the outskirts of Aomori. There I changed to a regional express train that took me underneath the ocean, through the Seikan Tunnel, to the island of Hokkaido—Japan’s northern frontier. Once back on firm land, the express took me past the regional capital of Sapporo to the small port city of Tomakomai. At this point I changed trains for the final time, catching the Hidaka Main Line, which skirts the southeast coast of the island.

Despite its impressive name, the trains on the Hidaka Main Line are only a single diesel car in length, more a glorified tram than a train, and run just a few times each day. The train ride is both exhilarating and terrifying, as it runs along the very edge of the ocean and occasionally has to screech to a halt for deer, humans, and other creatures that wander onto the tracks. It was a long three hours on the Hidaka line before I reached the town of Urakawa, located on the southeastern edge of Hokkaido, almost the last stop. Because I had caught the first train in the morning in Tokyo, I was able to catch the last train into Urakawa in the evening; otherwise it would have been a multi-day journey.

Figure 1.1 Map of Japan.

There are other ways to get to Urakawa. You can catch an airplane to Sapporo and then an intercity bus to Urakawa. Some people also take the car ferry from the mainland to Tomakomai and then drive to Urakawa. But I prefer to take the train. It is peaceful watching the landscape change from the sprawling urban metropolis of Tokyo to the golden rice fields and farmlands of Tochigi and Fukushima and then to the green forests of Aomori. When the train dives beneath the ocean and passes under the Tsugaru Strait though the Seikan Tunnel, the longest and deepest tunnel in the world, it feels as though one is passing through a liminal space, only to reenter an unfamiliar world.

About the same size as Ireland, the island prefecture of Hokkaido feels very different from mainland Japan. The air is cleaner, the sky is bigger, and there are far fewer buildings and people. Hokkaido still feels like the colonial frontier that it once was. Everywhere there are legacies of the original Ainu people, who were pushed out, colonized, and killed. The place names still mark many of the cities and towns: Sapporo, the dry great river; Otaru, the river between the sand banks; Tomakomai, the river above the swamps; and Urakawa, the river of fog. Museums dedicated to Ainu culture dot the landscape, keeping time frozen behind glass, even as the descendants of the Ainu people try to sustain their culture and language in the present.

Encountering Bethel

I first learned about Bethel in 2004 when I was doing research on disability protest movements in Tokyo. At the time, several national organizations of people with disabilities in Japan were staging large-scale demonstrations against the government. This fascinated me, as it seemed quite contrary to the image of Japan as the nation where the nail that sticks up is hammered down. Bullhorns and protest banners were out in force in front of the Ministry of Health and Labor. Since the early 1900s, people in Japan with severe physical, intellectual, or psychiatric disabilities had been warehoused in nursing homes and other institutions for their entire adult lives. At the protests, I watched as various grassroots organizations representing people with physical and psychiatric disabilities lobbied for greater funds to allow for more deinstitutionalization—the ability for people with disabilities to live independently in the community rather than in hospitals, nursing homes, and other long-term care facilities. The activists wanted better funding of independent living centers and guarantees for full-time personal care attendant coverage and other support mechanisms.

I was puzzled, though, by the absence of groups representing people with psychiatric disabilities. Encoded into Japanese law is an understanding of three types of disability: physical, intellectual, and psychiatric. Given the visibility of deinstitutionalization and patients’ rights movements in the United States and Europe for people with mental illnesses, I was curious whether there were any organizations of people with psychiatric disabilities that were organizing politically in Japan.

I went to several nonprofit organizations for people with psychiatric disabilities in Tokyo and Osaka, but for the most part they were operating as halfway houses, group homes, or sheltered workshops for people who had just come out of psychiatric hospitals.1 In one of these sheltered workshops, former patients folded cardboard boxes for bentō box lunches in silence. When I asked whether there was a place where people with psychiatric disabilities were more active, I was told about a small group named “Bethel” up on the island of Hokkaido.

I put off going to Bethel for the longest time. When I looked at a map, the town of Urakawa was a just tiny speck on the southern edge of nowhere. It would take me a good two days to get there and back, and I had little expectation that it would prove any different from the other places I had seen. But I blocked off a week in my research schedule and decided to pay it a visit.

Visiting Bethel House

The man with the moustache who greeted me at the train station in May 2005 was a minister in the United Church of Christ in Japan. Reverend Hamada was in his early forties and had just been assigned to the small church in Urakawa. He had not known much about the local church and its special relationship with Bethel House before he arrived, but he had since become a full-fledged supporter, continuing in the tradition of the previous minister, Reverend Miyajima.

Packing me into his beaten-up SUV, Hamada-san gave me a quick tour of the town. This was easily accomplished, as the town of Urakawa has only one main street about two miles long, which hugs the contour of the ocean. New Bethel (the name for the office headquarters of Bethel) and the train station are on one end, the Urakawa Red Cross Hospital is on the other. In the middle is the town hall, the library, and Bethel’s main store, Yonbura. It was late at night, and all of the stores were closed, so I peered into the darkness as we drove by.

Hamada-san had kindly agreed to put me up in the church rectory. He asked me if it was all right if I shared the space with a college student who was also visiting Bethel. We drove up to the church, which was nestled in a side street behind the station. It was a modern, two-story white concrete building, quite in contrast to the dilapidated wooden houses and shacks that lined the street in front of it.

My new roommate and I were staying on the first floor of the church, which was originally designed as a small apartment for the resident minister’s family but was now used as guest accommodations for Bethel visitors who could not afford to stay in one of the inns in the area. Staying in the church was free, but Bethel charged ¥1,000 (US$9) a night for the use of futons and blankets.

As I walked across the room to greet my roommate, the floor felt strangely soft. In some places it seemed as though my foot might go straight through. Despite the modern exterior of the church, it turned out that the floor was rotten in places, especially near the bathroom. I had to be careful to tread on the main beams only. Later on, I heard that the modern architecture of the building, with its spires and jutting edges, was entirely inappropriate for the long, cold Hokkaido winters, as the building had many leaks and cracks.

My roommate was a young college student from the mainland. She lived with her parents at home, worked during the day, and went to classes in the evening. A petite girl, she later confessed that she had been suffering from depression and, after reading a book about Bethel, had decided to come up to see what it was all about and to take a break from things. This was her first visit.

She had arrived the day before, and Hamada-san asked her to show me around while he dug out some laundered sheets for me. There was a huge pile of futons and mattresses in the corner. Before the minister left, my roommate asked him about the hot water, as the water heater in the bathroom apparently wasn’t working properly. The previous night, she had taken a sponge bath by heating water in a kettle on the stove. Hamada-san managed to turn on the small propane water heater for the bathroom so that we could take a quick shower in the chilly room, but the one in the kitchen remained broken for our entire visit.

The room itself was heated by the aforementioned large kerosene stove. Despite it being mid-May or early summer in Hokkaido, the evening air was quite chilly, and we needed the stove to stay warm. It was very efficient at this task, but we reluctantly turned it off at night since neither of us trusted it not to kill us with carbon monoxide poisoning, even with all the drafts in the room. Every year in Japan, several people die of carbon monoxide poisoning from indoor space heaters, so this wasn’t an entirely unfounded fear. We put extra futon blankets on top of ourselves in an attempt to keep warm at night. Lying in the dark with several heavy blankets pressing down on my chest, I wondered what I had gotten myself into.2

Morning Meetings

The next morning I woke up and found that I could see my breath in the air. My roommate had risen before me and had made a small breakfast for us. As we ate, we talked about what we would do that day. The first event on Wednesday mornings was the Morning Meeting at New Bethel at 9:30. We folded our futon mattresses and blankets and made our way out of the church.

The building called New Bethel was a twenty-minute walk from the church. We made our way down the hill and crossed the train tracks over to the main road. We walked along it, past the small train station, for another ten minutes until we reached New Bethel, on the westernmost edge of town.

New Bethel was a squat two-story office building. It had housed a printing company that had gone out of business, and Bethel had seized the opportunity a few years ago to buy it. Until then, Bethel had been run out of an old wooden building (now named Original Bethel, or just Bethel House) next to the church where I had spent the night. The first floor of New Bethel was a relatively open space with a small television and a smoking room on the side. Workshops, events, and seaweed packaging were done on the first floor. The main office space on the second floor was divided in two. One third of the room had a set of desks organized just like any Japanese office, but the remaining two thirds of the floor space was left open. When we arrived, the space had been arranged for a group meeting by placing a folding table in the front and organizing chairs around it in a semicircle.

Three people were sitting at the folding table in front. The woman on the far left was wearing an apron, and the other two were more informally dressed. The older woman on the ...

Table of contents

• Acknowledgments
• A Note on Language
• CHAPTER ONE
• CHAPTER TWO
• CHAPTER THREE
• CHAPTER FOUR
• CHAPTER FIVE
• CHAPTER SIX
• CHAPTER SEVEN
• CHAPTER EIGHT
• Notes
• References