“The related concepts of
“giving up hope” and “a life in decline”
were the most difficult for me to grasp.
I still struggle to view them positively."
“giving up hope” and “a life in decline”
were the most difficult for me to grasp.
I still struggle to view them positively."
Karen Nakamura
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Beyond IRBs: Anthropology & Disability Studies
On October 22nd, 2015, Karen Nakamura spoke on "Cultural Madness: Notes on an Anthropology of Psychosocial Disability" at the Center of Media and Public Affairs at the George Washington University. The event was co-sponsored by the English Department's Crip/Queer Studies programming and Disability Student Services. David Mitchell introduced Nakamura, noting her recent work, Disability of the Soul, and her upcoming project on Transgender in Japanese Culture. In front of undergraduates, graduates, and faculty, Nakamura opened with a call for more disability studies within the field of Anthropology, especially projects focused outside the United States. The speaker subsequently discussed her work with Bathel, an intentional Christian community in Japan that supports a wide variety of peoples with psychosocial embodiments, including schizophrenia and depression. While Nakamura ended up writing a book on her research, she first approached the group as a documentarian, living with the subjects of the film for an extended period of time in order to get to know them as distinct persons as she filmed and edited the work.
The choice of film-making came as a creative response to problems with restrictive ethics board guidelines. Such International Review Boards were developed for the medical sciences to police practices of human experimentation, including electro-therapy and the administration of experimental drugs. Since then, IRBs have been expanded in the social sciences, setting tight restrictions on the methodologies for interviewing human subjects. In addition to making data collection more difficult, IRBs have been criticized for protecting research institutions and universities from lawsuits rather than assuring the safety of interview subjects. As a result, vulnerable populations are often less willing to agree to interviews because they fear signing away their rights in perfunctory consent forms. In answer to these problems, Nakamura turned to the creative arts and humanities to further her work with and on disability communities. While sociological articles require IRB regulations a film does not but it is regarded as art not research, notes Nakamura. The speaker defended the use of such loopholes because it recognizes a critical difference between sociological research and the work of the Humanities: research looks at data in order to generalize the information into universal principles while the humanities and arts tend to focus on the particularity of texts and persons.
The choice of film-making came as a creative response to problems with restrictive ethics board guidelines. Such International Review Boards were developed for the medical sciences to police practices of human experimentation, including electro-therapy and the administration of experimental drugs. Since then, IRBs have been expanded in the social sciences, setting tight restrictions on the methodologies for interviewing human subjects. In addition to making data collection more difficult, IRBs have been criticized for protecting research institutions and universities from lawsuits rather than assuring the safety of interview subjects. As a result, vulnerable populations are often less willing to agree to interviews because they fear signing away their rights in perfunctory consent forms. In answer to these problems, Nakamura turned to the creative arts and humanities to further her work with and on disability communities. While sociological articles require IRB regulations a film does not but it is regarded as art not research, notes Nakamura. The speaker defended the use of such loopholes because it recognizes a critical difference between sociological research and the work of the Humanities: research looks at data in order to generalize the information into universal principles while the humanities and arts tend to focus on the particularity of texts and persons.
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The Bethel Community
The subject of Nakamura's documentary, "Bethel: Community and Schizophrenia in Northern Japan," was a group of neuro-divergent and neuro-queer persons living in a small town attached to a hospital and university. For years the hospital treated patients with a variety of psychosocial disabilities, offering institutionalization for many who lived in the facility as well as out patient assistance for those living nearby. It was from this population of outpatients that the Bethel intentional community arouse to promote mutual support and dialog. As the name suggests, Bethel was sponsored and founded by a Church group who wanted to affirm non-privatized, non-medical alternative forms of care in order to compliment and contrast the medical practices of the hospital. Modeled on programs such as Alcoholics Anonymous, Bethel members would meet, share stories, offer assistance and accountability, and consider their relations to society and the wider world. Indeed, outreach and advocacy became a corner stone of the program. Bethel members were eager to show their faces and stories with Nakamura as part of a mutual desire to deepen and spread a more complex understanding and visibility of lives with diverse psychosocial disabilities.
For the film, Nakamura chose to live with the Bethel community and attend meetings. She shared her own personal stories, particularly her experiences of depression. The decision to participate, she explains, came from a desire to witness Bethel from the bottom up (cultural) view rather than from a top down (administrative) perspective. To aid in this commitment, Nakamura did not research psychosocial disorders in any medical archives beyond a basic level of comprehension. She did not want to consciously or unconsciously diagnose any of the community members. Instead, she allowed the individual persons of Bethel to express and define themselves to her through community encounters. Nakamura recounted that at first members of Bethel kept her at arm's distance, habituated to the coming and going of outsider observers. Over time, however, sincere friendships formed as Nakamura made herself vulnerable and dwelled together in the collective life of Bethel.
For the film, Nakamura chose to live with the Bethel community and attend meetings. She shared her own personal stories, particularly her experiences of depression. The decision to participate, she explains, came from a desire to witness Bethel from the bottom up (cultural) view rather than from a top down (administrative) perspective. To aid in this commitment, Nakamura did not research psychosocial disorders in any medical archives beyond a basic level of comprehension. She did not want to consciously or unconsciously diagnose any of the community members. Instead, she allowed the individual persons of Bethel to express and define themselves to her through community encounters. Nakamura recounted that at first members of Bethel kept her at arm's distance, habituated to the coming and going of outsider observers. Over time, however, sincere friendships formed as Nakamura made herself vulnerable and dwelled together in the collective life of Bethel.
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Critiques and Benefits
While many academics might be suspicious of non-medical, Christian programs working with disabled communities, Nakamura found numerous positive alternatives that the socio-religious model offers over the privatized medical model. Part of what makes Bethel so beneficial for its members and what allows Bethel to function is that the Japanese government offers people with mental disabilities a living income, housing, and free healthcare. This is unthinkable and hard to duplicate in the United States where social welfare and universal healthcare are hardly comparable, admits Nakamura. Yet other aspects of Bethel are transferable. Rather than drug away the power of those with psychosocial illnesses or incarcerating (or otherwise institutionalizing) them in ways that isolate them and limit their agency (as is prominent in the United States), Bethel stresses social and cultural methods that reaffirm relationships. After persons with psychosocial traits become alienated from friends and family either by symptoms or by medical and legal agencies, Bethel works with the person to help bring them back into community, reestablish social bonds, and creating a sense of family.
Nakamura offered critiques as well. As a "total institution," the Bethel community creates a kind of dependency on its programming. There are few options to take some but not all of the assistance the institution offers. You are either all in or all out. Furthermore, following a kind of "Christianized Buddhism" (of the non-Hindu inflected variety), Bethel promoted a world-view of suffering oriented towards a release into oblivion. Affirming "giving up hope" and an acceptance of a "life of decline," where no matter who bad things are today, they will inevitably get worse, Bethel's more nihilistic philosophy was difficult for Nakamura to embrace positively. Furthermore, the Bethel community remains fairly conservative in its view of gender and sexual politics, limiting the forms of relation and embodiment of its members. Finally, Nakamura explained, the Bethel model is difficult to duplicate due to its ready made population drawn from the hospital's outpatients and inpatients.
Nakamura offered critiques as well. As a "total institution," the Bethel community creates a kind of dependency on its programming. There are few options to take some but not all of the assistance the institution offers. You are either all in or all out. Furthermore, following a kind of "Christianized Buddhism" (of the non-Hindu inflected variety), Bethel promoted a world-view of suffering oriented towards a release into oblivion. Affirming "giving up hope" and an acceptance of a "life of decline," where no matter who bad things are today, they will inevitably get worse, Bethel's more nihilistic philosophy was difficult for Nakamura to embrace positively. Furthermore, the Bethel community remains fairly conservative in its view of gender and sexual politics, limiting the forms of relation and embodiment of its members. Finally, Nakamura explained, the Bethel model is difficult to duplicate due to its ready made population drawn from the hospital's outpatients and inpatients.
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Other Crip/Queer Events at GWU
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Proffessor Karen Nakamura is an American academic, author, filmmaker, photographer and Associate Professor
of Anthropology and East Asian Studies at Yale University
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