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A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan
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.
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.
248 pages, Paperback
First published June 14, 2013
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Displaying 1 - 9 of 9 reviews
March 5, 2024
I have been obsessed with this book since I started it a week ago. Nakamura gives us such an intriguing glimpse into Bethel, a community of severely mentally ill people in the remote north of Japan (Ainu country), associated with Japan's Christian church, a driven psychiatrist and a charismatic central group of 'patients'. Bethel includes a set of group homes, some independent living facilities, a business, and treatment at the local hospital. With more than a hundred members, it dominates the town it is located within and has a significant waiting list.
Nakamura contextualises Bethel for non-Japanese readers. She explains the history of mental health treatments in Japan (institutionalisation is lengthy and still common, psychiatry requires no more than a medical degree to practice, epilepsy is weirdly included as a mental illness (as is addiction), and the country has a social welfare system). These sections can make the introduction heavier going than the book rapidly becomes, as Nakamura's ethnographic approach rapidly takes a back seat to the engrossing stories of the residents, the doctors, and the project itself. This is amplified by the addition of two films, viewable online once you have purchased the book, which bring to life the people she is writing about.
Bethel is fabulously interesting. Founded around the central belief that people with schizophrenia should aspire not to be cured, but to live a rich life, the facility is designed around sociality. Residents are minimally medicated, work together to stay safe during delusions (there is, hilariously, an annual prize for the best socially managed hallucination and delusion), and conduct their own diagnosis/research projects into themselves. The latter involves them identifying "sub-types" that focus on how their life is impacted (e.g. schizophrenia of the running-out-of-money and blowing-up sub-types), as well as developing strategies to deal with this. These strategies usually involve working with their delusions and with their community. One moving plan for a young woman whose paranoia made it difficult to function included asking her community to act as a jury for her, acquitting her of the crimes she was worried she might have committed. Principles for the community include " Trust in the power of the group", "Weakness binds us together", "Bethel’s colors [diversity] make sales go up!" and "Don't try to fix your illness by yourself".
Nakamura is clear that she is not qualified or focused to assess the effectiveness of this treatment. But for anyone with familiarity with serious mental health (clearly including Nakamura), it is hard not to fall in love with these concepts. Whereas cure-focused treatments tend to disempower sufferers, focusing on what they lack and on managing a myriad of medication side effects, Bethel's patients exert agency and have rich lives in the here and now. Some of the teachings employed to get here can be jarring: Bethel's principles also include "Go from a “life of ascent” to a “life of descent.”", for example, making explicit the core belief that happiness comes from eschewing ideas of progress. The workshop encourages "goofing off", talking, and "don't try too hard!" but to do so relies on sheltered workshop rules. Towards the end of the book, Nakamura covers many of the challenges encroaching on the system, including those posed by depression and personality disorder sufferers, for whom the intense focus on social connection is less miraculous.
In the end, though, Nakamura succeeds in showing us that even as this community will inevitably change, it has inspired psychiatry across Japan to change, and it has inspired sufferers and their loved ones to demand, experiment with and work towards new futures. And this sense of agency, of perhaps, being enough, is something pretty amazing and hopeful for all our futures.
Nakamura contextualises Bethel for non-Japanese readers. She explains the history of mental health treatments in Japan (institutionalisation is lengthy and still common, psychiatry requires no more than a medical degree to practice, epilepsy is weirdly included as a mental illness (as is addiction), and the country has a social welfare system). These sections can make the introduction heavier going than the book rapidly becomes, as Nakamura's ethnographic approach rapidly takes a back seat to the engrossing stories of the residents, the doctors, and the project itself. This is amplified by the addition of two films, viewable online once you have purchased the book, which bring to life the people she is writing about.
Bethel is fabulously interesting. Founded around the central belief that people with schizophrenia should aspire not to be cured, but to live a rich life, the facility is designed around sociality. Residents are minimally medicated, work together to stay safe during delusions (there is, hilariously, an annual prize for the best socially managed hallucination and delusion), and conduct their own diagnosis/research projects into themselves. The latter involves them identifying "sub-types" that focus on how their life is impacted (e.g. schizophrenia of the running-out-of-money and blowing-up sub-types), as well as developing strategies to deal with this. These strategies usually involve working with their delusions and with their community. One moving plan for a young woman whose paranoia made it difficult to function included asking her community to act as a jury for her, acquitting her of the crimes she was worried she might have committed. Principles for the community include " Trust in the power of the group", "Weakness binds us together", "Bethel’s colors [diversity] make sales go up!" and "Don't try to fix your illness by yourself".
Nakamura is clear that she is not qualified or focused to assess the effectiveness of this treatment. But for anyone with familiarity with serious mental health (clearly including Nakamura), it is hard not to fall in love with these concepts. Whereas cure-focused treatments tend to disempower sufferers, focusing on what they lack and on managing a myriad of medication side effects, Bethel's patients exert agency and have rich lives in the here and now. Some of the teachings employed to get here can be jarring: Bethel's principles also include "Go from a “life of ascent” to a “life of descent.”", for example, making explicit the core belief that happiness comes from eschewing ideas of progress. The workshop encourages "goofing off", talking, and "don't try too hard!" but to do so relies on sheltered workshop rules. Towards the end of the book, Nakamura covers many of the challenges encroaching on the system, including those posed by depression and personality disorder sufferers, for whom the intense focus on social connection is less miraculous.
In the end, though, Nakamura succeeds in showing us that even as this community will inevitably change, it has inspired psychiatry across Japan to change, and it has inspired sufferers and their loved ones to demand, experiment with and work towards new futures. And this sense of agency, of perhaps, being enough, is something pretty amazing and hopeful for all our futures.
October 9, 2017
really well-written ethnography. dug the visual companion pieces as well. lots of love and respect in this piece of academic labor.
November 20, 2021
I heard Karen Nakamura on a panel about disability justice and immediately bought this book out of interest in how people with mental illnesses that are usually addressed through medication can live with dignity and autonomy, caring for one another outside of institutions.
Nakamura was a participant observer over several years at Bethel House, an intentional community for and by people with schizophrenia and other mental health diagnoses in northern Japan. She contextualizes the community in terms of Japan’s overall approach to mental health care, then does a deep dive into how autonomy and collective care look by telling the stories of individual participants and the relationships between them. Along the way, she crafts a strong sense of place and time — how participants live out their days in a relatively small, isolated town, which also accounts for why the Bethel model works in this setting. As Nakamura points out a couple of times, people who have been involved in Bethel for years encourage others who find the model interesting not to copy it outright but to adapt it for the distinct character of their communities.
Maybe my favorite part of this book is where Nakamura retells a legendary anecdote among Bethel community members, about the time one man thinks he is being summoned to board a UFO. She uses the story as an example of how Bethel members are encouraged to speak openly about their hallucinations and external inner voices; by doing so, they become better equipped to help each other in moments where these conflict with reality (e.g. by endangering physical safety).
Nakamura also addresses what happens as fame and growth have push Bethel to bureaucratize. As it becomes a larger nonprofit operating under certain state guidelines, the central concept of member-leadership weakens precisely because outside auditors don’t see people with diagnoses such as schizophrenia as fit for the roles that gave them independence in the first place. It’s a strong case study in why agencies that fund social “solutions” need to be careful about taking a model that works for a small group of people, replicating it, and scaling it up.
A Disability of the Soul is a rich, tender study of one approach to community mental health care, of collectivity more broadly, and of people with schizophrenia. If I were reading this as an anthropologist, I would want more of a theoretical framework to address how this work fits in with related scholarship. But I get the impression Nakamura didn’t get into that much in order to appeal to a wider audience. I think she succeeds at that.
Nakamura was a participant observer over several years at Bethel House, an intentional community for and by people with schizophrenia and other mental health diagnoses in northern Japan. She contextualizes the community in terms of Japan’s overall approach to mental health care, then does a deep dive into how autonomy and collective care look by telling the stories of individual participants and the relationships between them. Along the way, she crafts a strong sense of place and time — how participants live out their days in a relatively small, isolated town, which also accounts for why the Bethel model works in this setting. As Nakamura points out a couple of times, people who have been involved in Bethel for years encourage others who find the model interesting not to copy it outright but to adapt it for the distinct character of their communities.
Maybe my favorite part of this book is where Nakamura retells a legendary anecdote among Bethel community members, about the time one man thinks he is being summoned to board a UFO. She uses the story as an example of how Bethel members are encouraged to speak openly about their hallucinations and external inner voices; by doing so, they become better equipped to help each other in moments where these conflict with reality (e.g. by endangering physical safety).
Nakamura also addresses what happens as fame and growth have push Bethel to bureaucratize. As it becomes a larger nonprofit operating under certain state guidelines, the central concept of member-leadership weakens precisely because outside auditors don’t see people with diagnoses such as schizophrenia as fit for the roles that gave them independence in the first place. It’s a strong case study in why agencies that fund social “solutions” need to be careful about taking a model that works for a small group of people, replicating it, and scaling it up.
A Disability of the Soul is a rich, tender study of one approach to community mental health care, of collectivity more broadly, and of people with schizophrenia. If I were reading this as an anthropologist, I would want more of a theoretical framework to address how this work fits in with related scholarship. But I get the impression Nakamura didn’t get into that much in order to appeal to a wider audience. I think she succeeds at that.
November 20, 2018
I read a lot of ethnographies due to the field that I'm in and truth be told I find most of the dry and tedious to get through but necessary all the same. Not this one--I thoroughly enjoyed the writing style, the content, the message. It was extremely palatable and interesting and flowed really nicely. I feel that Nakamura made the content relatable for everyone who has ever dealt with mental illness even if it wasn't schizophrenia. This is an excellent book that I would recommend to anyone interested in Japanese culture and/or mental illness.
March 26, 2023
1. The goal of Bethel House is not to cure/eradicate the illness, but to help people accept the problems and create a new form of life.
2. The UFOs case and the "self-directed research" approach is truly inspiring to me. If everyone knows what's going on, people will find ways to support you. What's more dangerous is to keep things within yourself. However, the tricky part is how to find/build a trustworthy group of people like BH.
3. The success of BH is a situated result with the geographical location and the surrounding infrastructure.
4. Visual ethnography is also inspiring to me
2. The UFOs case and the "self-directed research" approach is truly inspiring to me. If everyone knows what's going on, people will find ways to support you. What's more dangerous is to keep things within yourself. However, the tricky part is how to find/build a trustworthy group of people like BH.
3. The success of BH is a situated result with the geographical location and the surrounding infrastructure.
4. Visual ethnography is also inspiring to me
September 27, 2020
I enjoyed this book
Great book. Learned a lot about alternative ways to treat those struggling with mental health. Worth reading, especially if you are interested in community health
Great book. Learned a lot about alternative ways to treat those struggling with mental health. Worth reading, especially if you are interested in community health
February 26, 2025
I read this book for Medical Anthropology class and it was absolutely amazing. I would recommend it to anyone interested in mental health and I really loved how it intersected treatment in Japan and Bethel with our American treatment methods.
April 8, 2018
A must-read for anyone interested in mental health issues in Japan.
April 27, 2014
only read relevant chapters ... not sure what to think of it yet ...
Displaying 1 - 9 of 9 reviews