Books

Karen Nakamura’s A Disability of the Soul

A Disability of the Soul:
An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan

by Karen Nakamura

Cornell University Press, 2013

US $24.95, Paperback + DVD

 

It takes a strong heart and an open mind to study something like schizophrenia. No doubt many anthropologists have taken on this courageous task, many to be eventually rewarded with pieces of literature that have truly shifted our thinking about psychiatric disability. A Disability of the Soul, by Karen Nakamura, is one among these brave ethnographic accounts – however, the intimacy with which it was carried out brings us deeper into the world of Japan’s psychiatrically disabled than we’ve ever traveled before. Nakamura achieves this intimacy by providing for us a literary and visual home-video of sorts which is comprised of this book along with two ethnographic films; Bethel: Community and Schizophrenia in Northern Japan and A Japanese Funeral, chronicling the life and times of Bethel House (Beteru no Ie), a collective community of mental illness sufferers and care givers, thriving and bustling in the otherwise severe space of the Hokkaido coastal village of Urakawa. Bethel is a socially progressive organization that provides support for many with schizophrenia and other severe mental illnesses. Secluded from Japan’s intimidation of mental weakness by the snowy winters and the insulation of a economically devastated township, Bethel House has grown from Christian good-will beginnings to accommodate discharges from the nearby Red Cross psychiatric unit to now a profitable collection of entities that support and provide social guidance for its some 150 members (1). Nakamura translates beautifully and subtly the life of Bethel House “members” (i.e. participants of the program and residents of the community) without in the slightest discrediting their unique suffering in the world. Bringing the individual to the forefront of the narrative, A Disability of the Soul feels co-directed in a way by its informants and thus allows an otherworldly interaction between Bethel members and the book’s readers. Ordinarily, the severely mentally ill are positioned as “lesser” or helpless in the eyes of the public however the Bethel movement puts them at the helm of their own treatment and indeed their own lives, something that is not a guarantee in a psychiatric hospital. In a country where decades long psychiatric inpatient stays are common enough, which leave patients completely dependent upon provided care and administrative guardianship, Bethel members are in a radical new role, able to learn to care for themselves and in some small ways, for others as well. Bethel is indeed a place of healing for those with severe mental illnesses in Japan, reaching outside the walls of the traditional method of “holding” the mentally ill in psychiatric wards and a place of interest among what Nakamura terms “psychotourists” (1), who travel to Bethel, buy merchandise like dried seaweed or fish from Bethel production facilities or attend presentations on Bethel’s philosophy. As mental illness is a foreign world to many, and therefore heavily stigmatized in some respects, Nakamura states she “felt it critical to use both visual and textual modalities” to aptly represent the manifold intimacies of such a life in such an organization (18.) Bethel provides what many organizations for the mentally ill do, housing, support, and other therapeutic activities but Bethel also provides something most do not, freedom to be who they are, freedom to be ill.

The Bethel movement started with simple support meetings in 1978 and after years of growth and increased following, officially became Bethel House in 1984. Nakamura surrounds the story of Bethel’s beginnings with a look at the sociohistorical chronicle of formal psychiatric care in Japan, spanning back some 150 years (33). Like many modern day psychiatric systems, Japan’s tendency towards extremely long inpatient stays reflects not just the increasing privatization, and therefore profitization, of psychiatric care but the cumbersome task of housing and caring for the mentally ill who may be chronically disabled yet are unable to fill any prescribed productive role in modern society. Even after a series of psychiatric care scandals hit Japan in the 70’s and 80’s, resulting in a more aware public and a seemingly more cautious administration, the challenge of how to integrate formerly socially moribund beings into modern Japanese life, where families aren’t always receptive and support systems are rarely robust enough to accommodate those who have been hospitalized for decades remains. Termed shakaiteki nyūin or “hospital admission for social reasons” (65), sometimes patients were hospitalized in large part because of the difficulties, both socially and logistically, their families faced in caring for them. Common at least for some of Bethel members, returning to the safety and security of inpatient wards, where one can truly and with wholeness fulfill the “sick role” Talcott Parsons has so defined (67), meant leaving behind the responsibilities of being a shakaijin, a fully social being (81).  The paradox of such a concept occurs, however, when a “sickness” like mental illness prevents patients from ever really making a full recovery. Thus Bethel members, and all of Japan’s psychiatrically disabled, lie prone in liminality between the two ‘complete’ states of sickness and of health, a condition that in and of itself causes distress. Unique to Bethel is the attempt to work with both these roles, the sick and the well, and bring to emergence a being that is indeed, mentally ill, but also socially well. This takes an ability to accept that they will probably never recover in the classic sense but that they could still be functioning members of society, an attitude rare indeed, especially in modern Japan.

While some have criticized this philosophy as defeatist or counterproductive, Bethel’s directing psychiatrist, Dr. Kawamura, sees it as a way to let Bethel patients come to terms their situations, one of chronicity and indeed disablement.

Sono mama ga iimitai (things are better left alone) and soredejunchō (things are going well as they are)(45), are two noted expressions that undergird this unorthodox Bethel attitude. The Bethel way of life is worth studying precisely because of this method of thought, but it works, in so much that it brings patients out of the hospital and out of confinement into the social world they formerly evaded. To facilitate this emergence among Bethel members, Dr. Kawamura encourages a confrontation of difficulties and instead of blind optimism, works with the patients to make struggle a part of their life. This rupture of the accustomed fabric of repose, the Doctor maintains, is “where the real recovery begins.”(139). Adopting a recovery model based off of Alcoholics Anonymous (153), Bethel’s treatment principles emphasize patient empowerment, admittance of weakness and the view of psychiatric illness as chronic disability.  A stance more challenging to psychiatric sufferers, as they are encouraged to deal with life in a socially conscious way despite profound social disablements, this method dose indeed force difficulty where it was avoided before but the results are undeniably salubrious. It is precisely these confrontations with difficulty where members come together to share in this privileged predicament and the ways in which they share and come together is where Nakamura tells the heart of her story.

To reconcile difficulty and wellbeing, Bethel members engage in a variety of rehabilitory techniques designed to facilitate integration without concealing the chronic disabilities they have. These include Social Skills Training (SST) and Self-Directed Research (169), both of which challenge Bethel members to explore their illnesses on many fronts, mainly acknowledging their responsibility to their social selves. SST may involve members acting out social schemas that allow for the “thinking through” of what can be intensely challenging encounters for the mentally ill. The Self-Directed Research asks members to externalize their diagnosis and in a self-reflexive way find a level of understanding that helps lessen the burden of suffering (174). Bethel members are also socialized throughout the day, following a schedule of meetings, meals, sheltered workgroups and discussions that focus on the psychosocial being. Nakamura does not use the distancing technique of pseudonyms (20) and chose this method in part because of the request of Bethel members themselves. This speaks to the openness and honesty Bethel members have in regards for their illnesses. Another key feature of Bethel philosophy is the openness and acceptance of hallucinations and delusions as possible tools in their healing process. Dr. Kawamura considers the voices members hear as possible “indexes to other things that are going on”(82) and thus meaningful to the therapeutic encounter. Auditory hallucinations, which afflict many of Bethel members, as they are predominately carrying a diagnosis of schizophrenia, can reframed into attributes or allies. Gencho-sans (honorable voices)(8), heard by Bethel’s schizophrenic members could even be called upon to help combat negative or accusatory voices or thoughts (171). Bethel even hosts an annual competition titled the Hallucinations and Delusions Grand Prix (82), which recognizes the hallucination or delusion that brings the most members together. At Bethel, the components of mental illness are celebrated while the suffering caused by them is not.

In Bethel: Community and Schizophrenia in Northern Japan, a closely domestic look at Bethel unfolds. The many daily scenes that make up the Bethel movement here expose tensions and complications that would render the watchers’ gaze awkward if it weren’t for all the laughter. Opening with a group of enthusiastic Bethel members singing a collective song of their hardships while maintaining robust laughter, clapping and stomping, Bethel principles are indeed at work. In Bethel, members face the camera and without fear talk about hallucinations, trauma and loss with an almost cheerful comportment. Amidst stories of first psychiatric breaks and dangerous delusions, Bethel members and their caregivers alike show us a face of hope, optimism and warm-heartedness.  Then, in A Japanese Funeral, Nakamura shows us a painfully real variable in the life courses of the mentally ill, that of a sometimes dramatically shortened life span from either suicide, complications from treatment or comorbid disorders. In a complimentary dialogue, A Japanese Funeral brings Bethel and the lives it depicts into sharp contrast with the biomedical and sociomedical reality of a mentally ill life; it is, after all, one of illness and chronicity. Gen, well loved by many and a fully sociable Bethel member, died unexpectedly in his sleep, prompting a coming together of Bethel members to say goodbye. In Japan, death is a process that can span several days or at least several practices (192). For Gen, Bethel members prepared his body for showing, proffered his favorite snack foods and cigarettes, cried, laughed, sung, prepared his body for cremation and ultimately, healed. Gen’s funeral was an unfortunate event but one of beautiful mourning that seemed almost choreographed in time. As Gen’s family and friends selected from his ashes bone fragments to take with them, the viewer feels voyeuristically involved in this entrancing custom. Providing a congruous look at a particular set of life stages, Bethel and A Japanese Funeral frame mental illness in a light of intimacy, emergence and misfortune. Nakamura’s films do not mirror the text and they do not simply translate written word into visual representation. They do, however, provide rich accompaniment to what is an already rich ethnographic work.  Complimenting the Bethel method of seeing therapeutic time as cyclical rather than linear (24), Nakamura’s films do not provide a sense of progression in the therapeutic context, rather they link together the experiences of various Bethel members, being careful to not probe old wounds or foreshadow future healings but simply letting members exist in their therapeutic context. Fixed though this context may seem, Dr. Kawamura wanted this for Bethel members; he wanted them to struggle and have to deal with difficult life issues faced in the here and now so as to bring them closer to a functioning psychosocial life. Taking this role as a reluctant psychiatrist, Dr. Kawamura saw the members who had the hardest time as those with the best prognosis long term (153). Letting them struggle, providing only cursory support, disallowing their reliance on copious pharmaceuticals, these were the ways the Doctor facilitated growth and healing and these ways worked. Conceptually, Bethel is a “field of practices” (219) that is being studied by those all over Japan who want to find a better way of life for the mentally ill. This way of life is one of sociality, struggle and sacredness. Above all, Bethel is simply an understanding of the mentally ill soul that many have not reached, an understanding that is welcoming of disability, appreciative of difference and perceptive of emotion.

 

In the words of Bethel’s enthusiastic members:

 

Isn’t mental illness terrible? (PAPAYA)

It’s our gift from God.

Even if we’re different from normal people,

We’re all first-class sickos.

 

To learn more about Karen Nakamura’s project take a look at this interview with her – conducted by science writer Karen A. Frenkel – which Somatosphere published earlier this year.

Erica Rockhold is working on her Masters in Anthropology at Northern Arizona University where her interests lie in emotion, language and identity.


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