"An Anthropology of Psychosocial Disability" with Karen Nakamura

“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."

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.

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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.

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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.

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Other Crip/Queer Events at GWU

"Why I am Bioconservative" with Rosemarie Garland-Thomson

"Disability Comes of Age at the George Washington University"

"Crip/Queer Studies at the George Washington University"

"Composing Disability Conference 2014"

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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

DeafLibrary.org

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"Why I am Bioconservative" with Rosemarie Garland-Thomson

“Who gives dignity? 
Humans or God?"

Rosemarie Garland Thomson

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Pro-Life Disability Politics

On September 17th, 2015, Rosemarie Garland Thomson spoke on "Why I am a Bioconservative" to a packed lecture hall at the George Washington University. The event was coordinated by the GWU English Department as part of its Crip/Queer Studies programing. David Mitchell introduced the speaker, praising her as a foundational figure in Disability Studies, authoring such influential texts as Freakery, Staring: How We Look, and Extraordinary Bodies. In an hour and a half, Thomson spoke on the important but often unspoken alliance between religious conservatism and non-religious disability activists around "Pro-Life" issues, specifically the abortion of fetuses to be born with physical or mental impairments, euthanasia, and the assisted suicide of the disabled.

Historicizing the systematic elimination of disabled bodies, Thomson traced many recent and current practices to the eugenics of the early 20th century, citing proto-holocaust programs in Germany where gas chamber technologies were pioneered through the mass incarceration and killing of peoples with disabilities. While eugenics has since changed names and strategies, the bio-technologies that eliminate or impair socially undesirable lives continue to multiply. Such medical mechanisms target the youngest and oldest groups but cluster around those lives marked as impaired or chronically ill. Critical to the continuation of eugenic ideology are the cultural assumptions and values that encourage society to believe that persons are "better off dead than disabled." 

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Unexpected Allies

By opposing not only the use but the cultural indoctrination of eugenics, disability activists find themselves joining forces with religious conservatives. Thomson contends that while religious and non-religious "bioconservatives" may disagree in first principles, these groups join together in their conclusions. For instance, "dignity" is a key issue within bioconservatives of either ilk. In this context, dignity designates a life worth living and deserving of "moral personhood" (rights and duties) as well as a "quality of life" (well being in medical care, politics, and employment). Religious and non-religious groups may disagree in the source and authority that bestows dignity: humanity or God. Nonetheless,  persons of different belief systems can come together to preserve the dignity of those marked as undesirable: those who are "too expensive" in relation to their social worth.

Despite a history of shared political agendas, the cooperation of religious and disability activism is an uncomfortable and often controversial topic in the University setting. "Using the word 'God' tends to tick off liberal academics," Thomson admits after carefully defining the diversity of those who might be considered bioconservative. In the light of increasingly partisan politics and rhetoric, many liberal scholars overtly or indirectly oppose suggestions that any part of the Pro-Life agenda might be worthy of consideration by non-religious fields - as academia is often imagined. A shift towards less reactivity at words such as "God" or "conservative" as well as a willingness to see reasonable middle grounds or overlaps in Pro-Life and Pro-Choice movements is necessary to critical, thoughtful engagement in the preservation and improvement of disabled lives. Indeed, Thomson admits, the goal of "preserving" rather than "eliminating" lives implicit in disability activism suggests within it a kind of "conservatism" - even as it may be distinguished from religious extremism.

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Rituals of Care

Besides legal and medical initiatives, Thomson stressed the important cultural work of bioconservatism that promote a culture of life. In particular, ritual practices such as the washing of bodies are acts of care common among religious and non-religious communities. Washing in hospitals, elderly care facilities, families by caregivers, as well as the sacramental blessing of children, the sick, and the dead are all examples of rituals that recognize the dignity of the bodies they encounter. Such rituals recognize the dignity of embodied experiences, Thomson argued. Through repetition, rituals directly create the conditions for a quality of life while affirming moral personhood. If washing (including toileting) were more openly a communal practice where the reception of care is a sign of dignity rather than shame, fewer people would be instilled with the belief that they would rather be dead than unable to clean themselves. Fewer people with disabilities, including the elderly, would be associated with wallowing in filth if indeed fewer would be left to wallow. Ritual practices would bond care givers and care receivers, instilling a culture of life in the community.

In her conclusion, Thomson fielded some questions about other fields that share similar values as the disability activists who may have reason to rethink the old opposition to bioconservative politics. One example offered was the case of HIV+ gay men, lesbian, and transgender persons. During the AIDs outbreak of the late 20th century, there developed a similar culture of death where the death of LGBTI communities by the disease were seen as excusable even laudable by those who saw non-normative gender and sexualities as abominations against God or Nature. In this time, images of caregivers washing the sick and dead bodies of AIDs victims became politically charged. Such acts gave dignity of those dying and stated that despite the high cost of care, LGBTI lives were worth preserving. Thomson affirmed that many peoples, especially the subjugated, have reason to reexamine their positions on bioconservativism and work towards creating a culture of life.

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Other Crip/Queer Events at GWU

"An Anthropology of Psychosocial Disability with Karen Nakamura"

"Disability Comes of Age at
the George Washington University"

"Crip/Queer Studies at
the George Washington University"

"Composing Disability Conference 2014"

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Rosemarie Garland-Thomson is Professor of English and Bioethics at Emory University, where her fields of study are disability studies, American literature and culture, and feminist theory. Her work develops the field of critical disability studies in the health humanities, broadly understood, to bring forward disability access, inclusion and identity to communities inside and outside of the academy. She is the author of Staring: How We Look and several other books. Her current book project is Habitable Worlds: Disability, Technology, and Eugenics.

RosemarieGarlandThomson.com

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Crip/Queer Studies @ the George Washington University

"The primary idea was to address 

an emerging interest in intersectionality studies – 

the ways in which we all occupy 

multiple identities"

David Mitchell
The GW Hatchet

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Recently, the GW Hatchet did an article,
"English professors combine areas of study 
for new specialization" by Chase Smith, 
on the emerging area of Crip/Queer studies 
in the George Washington University English Department.
I was interviewed and briefly quoted in the article.
Here is a more complete version of what I said.

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The value that Crip/Queer studies at the George Washington University has in the wider academic community was perhaps most clearly evidenced for me as I was preparing to leave GWU after completing a Masters Degree. At that time, I was fortunate and privileged enough to be accepted into substantial Ph.D programs, any of which I would have been immensely gracious to attend. It is this bounty of offers that drew my attention back to GWU. In some of the correspondence I received inviting me to join the university, it was mentioned that they wanted someone like me, doing what I do. They had no one else. Thinking this over, I found that they may very well be right. 

Indeed, what we do here at GWU is in many respects unique, or at least rare - too rare. Universities offer a bounty of gifts that no student can repay, but GWU offers a unique combination of resources and mentorship that cannot be found anywhere else - what we call our Crip/Queer Studies. In the end, I chose to go to GWU for my Ph.D because I am a unique scholar, with a unique project, and the unique programs at GWU, especially in Crip/Queer and Medieval Studies, creates a unique convergence of opportunities that I want to grow in and further throughout my career.

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What characterizes myself, my project, and Crip/Queer studies is not only an attention to the uniqueness of particular persons but the movement that turns from individual to collective struggles. It is not unheard of to have centers for Disability Studies and LGBT Resources, but often the premise of these programs is the policing of borders around identity categories. There are critically important issues and violences that stick to our bodies with the glue of identity and this should never be underestimated. However, identity can too often work by turning away from the shared experiences of those who are not recognized as sharing an identity. Too often, for instance, transgender is left out of the considerations of LGBT activist groups because the issue of gender is often handled separately from the issue of sexuality (which has become the focus of the organization). 

Likewise, to use the same example, transgender is rarely considered a part of the disability rights movement, despite the shared experiences with social mechanisms of diagnosis, treatment with drugs or surgery, and a history of alienation, stigma and incarceration. In academia, in part propelled by the work of the scholars here, the words Crip and Queer signify not merely a more elastic collection of experiences but a methodology that critiques identity as itself a part of the mechanisms of social control. Rather than close off the conversation, Crip/Queer studies embraces the collective struggle of the Trans, the Crip and the Queer with countless other marginalized modes of living.

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As a transgender woman completing her Ph.D with a dissertation on transgender in the middle ages, GWU's Crip/Queer studies area offers the unique resources and support systems that make my scholarship possible. Any time you enter into careers where your community and your area of work are underrepresented or unrepresented, there are bound to be countless roadblocks as people find it difficult to even imagine the possibility of your existence within the field. The choice to come out as transgender and transition occurred to the sound of countless doors closing - relationships I would never have, conversations I would never hear, jobs I would never get. 

The unlikeliness of finding work only compounded when I made the decision to pursue the study of transgender in the middle ages, a time and area of research, many too readily assume, in which discussions of transgender has no place. One of the first investments GWU's Crip/Queer Studies offered me was to open the door to give me entrance into a shared academic space. It does more than imagining the possibility of a more inclusive and diverse social project, it makes continued investments in students, faculty, staff, and programming to make those possibilities into a reality.

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In particular, it is worth noting a few features of GWU's Crip/Queer studies area that make it a fantastic resource. First, the quality and diversity of the faculty in the Crip/Queer area of study makes GWU a powerhouse that supercharges intellectual energies not only here, in the US, but transnationally. Students of Prof. Robert McRuer and Prof. David Mitchell travel abroad to places like the Czech Republic and Germany to experience the living material cultures of crip and queer subjectivities past and present. They also attract scholars from around the world to visit to give scholars at GWU perspectives on issues of race, religion, gender, sexuality, and disability that are otherwise difficult to get in and around DC. 

This influx of academic resources are none the more evident than in the Disability Studies conference hosted at GWU every couple years, where the University becomes a magnet for the critical work of leading scholars from around the world. The coursework provided by the Crip/Queer faculty and graduate students widen the discussion of medieval, early-modern, american, and british, post-colonial literatures to include often elided topics. As a result, the unique scholarship being produced from the undergrad level, to the Ph.D, to the faculty are demonstrating in quantifiable and unquantifiable ways the invaluable products of hosting a Crip/Queer studies group at the University.

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