Monday, October 26, 2015

"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




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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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"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




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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.



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Tuesday, October 13, 2015

The Island of Hermaphrodites: On Mapping Intersex & Disability


“First-world feminist discourse locates 
[intersex politics] not only ‘elsewhere’ 
...but also 'elsewhen' in time"

Hermaphrodites with Attitude
Cheryl Chase
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Dis-Orienting the Place of Hermaphrodites

Crip theory asserts that the location of disability is in the environment, not in the body. Disability is how biopolitics limits, manages, and marginalizes the diversity of embodiments. It determines who has access to where - what bodies may move through space and what bodies are relegated to specific out of the way places. To illustrate how this works, I begin with a recent story from my life. I am standing in a private room after being pulled aside by airport security in Washington DC - the USA's political epicenter, a national loca sancta. Two TSA agents are staring blankly at me. They share coded messages between the two of them before explaining to me that the body-scanner on which their usual screenings depend was unable to read me. I learned that these scanners have two settings: male and female. The machine effectively reads you, produces an essentially naked image of your body (much like the images of heremaphrodites and amazons found in medieval exempla and maps). The machine then compares it to standard body maps looking for anomalies. It turns out that I failed to pass either scan on both the male and female setting. I was unreadable to the TSA's biopolitical machine. As a result, the TSA would have to "more intensively" search my body by hand. For a while they just stood there, waiting for me to submit to a further policing of my gender. The TSA stared blankly at me. The machine stared blankly (unknowingly) at me. I was unmappable to them, off the pioneered and civilized world of gender, and here there be monsters.

In “Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism,” Cheryl Chase asks, “Why… have most first-world feminists met intersexuals with a blank stare?” [i] To answer this question of tacit uncomprehending exclusion, Chase examines the spatial logic that has literally and metaphorically marginalized and provincialized intersex biopolitics, locating it in foreign places, out of the way of the globalized, mobile, western community. While the compulsory surgical reconstruction of intersex children ebbed in the 1990s, afterwards seeing a decline in intersex visibility and activism, at the same time the publication on such practices still occurring in colonial and post-colonial places such as in Africa were pervasive. “First-world feminist discourse locates [intersex politics] not only ‘elsewhere…’ but also “elsewhen” in time,” notes Chase. As a result of the western public slowly erasing intersex in the shared global space, it is being re-imagined as a provincial problem of another time and another place. In the next few minutes I will chase after Chases’s “hermaphrodites with attitude” supposed to be located in the past, in another place, to argue that modern marginalizing structures of power have roots in the genealogy of pilgrimage as a narrative and social practice. As a genre, pilgrimage features crip and gender non-binary bodies coming from the margins of the geopolitical world towards centers of authority, the “loca sancta,” to pay deference to material and symbolic powers. In return pilgrims were promised healing and betterment, to become more whole, more like people of privilege.[iii] I consider these motions of social erasure alongside alternative modes of pilgrimage as narrated in John Mandeville’s "Travels," where central bodies who find themselves in positions of power (i.e. able-bodied cis-gender men) travel to the margins and on the way become more crip and intersexual, and returning to the center to bend maps of space, power & embodiment.[v] 

The concept of “places” itself as a relatively stable categories of locating persons, has historically worked to confine crip and intersex bodies on the margins by taking them out of the shared “space” of gender conforming persons and placing them in special sites. Eli Clare considers this in Exile and Pride, where he proposes “the Mountain” as the loca sancta par excellence, a metaphorical place that by its centrality, places difference on the margins.[ii] "The mountain as metaphor looms large in the lives of marginalized people. How many of us have struggled up the mountain, measured ourselves against it, failed up there, lived its shadow?” asks Clare. A metaphor for our various “loca sancta,” the Mountain functions as an over-determined orientation point, structuring the flow of power from the margins to the center & associating centrality with normate embodiment. For medieval Christian pilgrims, the Mountains of Jerusalem functioned as the center point in the circular map of the Christian Mappa Mundi that positioned all other places, including the island of the hermaphrodites, as monsters on its margins.[iv]  In comparison to centralized movements of the body, crip and intersex lives create crises of category that are combatted by the making of places of exception (freak shows, islands, prisons, medical theaters) where they are contained. “The history of freakdom extends far back into western civilization,” Clare recounts on the practices of showing lives and their places of exclusion as points of interest on the margins of the normate world. Over time the motions of marginalization are copied over and again, and the crip & intersex internalize a place in the world as monsters and freak-shows on the margins of society. “To myself, I was a freak, incapable of loving or being loved, filled with shame about my status as a hermaphrodite and about my sexual dysfunction,” writes Chase on the de-globalization of herself as a self-exile from her body; a provincializing, a freakening.

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Two Pilgrimages: On the Anti-Loca Sancta

Thus  while pilgrim narrators often work as “showmen,” exhibiting social mobility to maintain distance & difference from the limits of place set on the shown, the monstrous crip & intersex bodies, pilgrimages reveal that these boundaries aren't stable enough to maintain this difference, leading to lives existing, interacting and shaping one another in what Michel de Certeau calls the dynamism of shared space. [vii] Moved from a circumscribed “place” in the margins into the shared space, crip and intersex pilgrim narratives bend the map of geopolitics, opening lines of flight & biopower around the world (197). “We seek to create an environment in which many parents of intersex children will have already heard about the intersex movement when their child is born,” writes Chase. “Such informed parents we hope will be better able… to find their way to a peer support group and counseling rather than to a surgical theater” (203).  In the history of pilgrimage in marginalizing disability and intersex, Mandeville’s travels both follows and undermines the structures of movement and place. This dual effect is evident in the text’s two half, representing two pilgrimages. The centralizing structure of Jerusalem’s as loca santca can be seen in the first half of his pilgrimage text, on his journey from England to Jerusalem. Yet numerous scholars have noted, in the second half of his pilgrimage and world mapping, Mandeville swerves. Instead of going back to England, Mandeville starts a new pilgrimage, from the center of Christianity to the margins and back. In the process, his body is transformed, his privileged mobility is infected, and he brings the effects of the margins back to the center. Mandeville starts with a model of place that puts crip and non-gender binary bodies on the margins of his world map yet after visiting the place of hermaphrodites, his sense of his body and map break down, overwhelmed by experiences of interconnected difference.
The island and bodies of hermaphrodites inscribe a challenge to the project of mapping space by resisting easy boundaries of gender or embodiment. Around this cast-off place, “beth peple that beth bothe man and womman, and have membres of bothe." The monstrous here is not simply a metaphor but a material and social body. These are at once hybrid bodies with two natures, man and woman, represented by the repetition of the word "beth," as well as whole beings that exist between definable states. While the hermaphrodite remains an object on the margin to be glimpsed at by not identified with, to share a place in his world but not share his space, by traveling to an island on the margins, the farthest possible distance from Jerusalem (in the center), Mandeville suggests that hermaphrodites exist in and as an anti-loca sancta, a center of their own that possesses the power to draw people away from the center on new winding paths. Unlike the “first world feminists” who look at intersex with a blank gaze, Mandeville’s body is redirect and changed by his pilgrimage to the margins. On his return, Mandeville and his text come to embody of the diversity that is erased and marginalized when he travels to Rome to present himself and his text to the Pope as evidence of the worlds diversity, "marvels I had seen in different countries." Referencing a Mappi Mundi in Rome as authorizing his body and account, Mandeville affirms the role of pilgrim narratives in deferring to central loca sancta as governing the geopolitics of those on the margins. In the process, he affirms his own privilege as a sign of that central power, as a cis, Christian male with the mobility to exercise spatial power. Yet this 2nd pilgrimage from the centers of the Christian world to the margins and back, sustains a tension with a heterodox provincialism that keeps its story open at its ends.

Becoming embodying the margins on his pilgrimage, Mandeville brings its monstrosity, its freakishness, back to the loca sancta. By the end of the book, after several chapters in which dozens of diverse lands and peoples are viewed very quickly almost as though Mandeville is speeding up in his travels, his narration becomes an orgy of difference, trying to jam as much in as possible, almost gasping for air: "There are many countries and marvels I have not seen, therefore I can’t describe them correctly." By his travels, Mandeville loses the ability to speak. In the Cotton manuscript, he writes that he has lost the ability to walk because of "arthritic gout." The pilgrim’s ableist attempt to be everywhere and all things proves impossible. Mandeville concludes his travels leaving room for other pilgrim narratives. "I wish to say no more about such marvels as are there, so other people might travel there and find new things to describe." In an alternative there & then, crips and Hermaphrodites look back at the blank stare of white feminism & western patriarchy waiting to break into the shared space of here & now.

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[i] Cheryl Chase. "Hermaphrodites with Attitude: Mapping the Emergence of Intersex Activism." GLQ: A Journal of Lesbian and Gay Studies. 1998. pg 207.
[ii] Eli Clare. Exile and Pride: Disability, Queerness, and Liberation. 199.
[iii] Sabine MacCormack. "Loca Sancta: The Organization of Sacred Topology in Late Antiquity." The Blessings of Pilgrimage. 1990. pg.1.
[iv] Hereford Mappa Mundi. Hereford Cathedral. c1285.
[v] The Book of John Mandeville. c1357.
[vii] Michel de Certeau. The Practice of Everyday Life. 1980. pg. 71.