I spent the last four days at the Society for Disability Studies conference (SDS). This conference has a lot of serious problems, including high financial cost, plenty of jargon, and ongoing racism. It’s also amazing in some ways, including great people, better accessibility than any other academic conference I have attended, more undergraduate presentations than any other academic conference I have attended, and fantastic conversations. I decided to go mostly because it would give me a chance to hear presentations by people whose work I admire. One of those people is Karen Nakamura.
I first heard Dr. Nakamura speak at a queer disability symposium at NYU a few years ago. I was so excited about her work that I rushed out to buy her most recent book—Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan. In Disability of the Soul, and the accompanying short films, she shared some of what she learned about a community in Northern Japan where most people have schizophrenia or some other form of mental illness—a “disability of the soul.” This community sounds pretty amazing, although Dr. Nakamura is careful not to romanticize it, and of course it has its problems. Still, most people live and work and love in the town, supporting each other and building community, going to the hospital relatively rarely and mostly on their own terms. I really recommend at least checking out the two minute trailer to the film Bethel if you can. It has the welcome song that people in this community sing, and I love it.
I’m grateful that Dr. Nakamura shared information about this community–with the consent and encouragement of that community. I’m also grateful that she disclosed that she too has what she terms a biopsychosocial disability. While she lived in the community as a scholar studying the community, she also participated in that community as a woman with a disability.
I want to share some of what I heard Dr. Nakamura talk about at SDS. But I also want to make it clear that I was very, very tired when listening to the talk, and that now I’m trying to remember it a few days later. I’m probably getting some things wrong, and I know I’m missing a lot.
The title of her talk was “Why I am Not a Medical Anthropologist.” She started out showing an image of brain scans. These scans showed the amygdalas of a gay man, straight woman, lesbian, and straight man. She pointed out how it was supposed to show that gay men’s brains were like straight women’s brains, and lesbians’ brains like straight men’s brains. She pointed out that it was gay men who did this research, on the theory that it would lead to legal protections for gay people–but that it carried forward old medicalized theories about “inversion,” doesn’t really make a big difference legally, and obviously didn’t reflect anything like the whole world of possible genders and sexualities.
Then she talked to us about how she did research on Deaf communities in Japan, and then on psychiatric disability in Japan. Apparently, as soon as her research shifted from deafness to psychiatric disability, people started to label her as a medical anthropologist, instead of a cultural or visual anthropologist. That has a certain irony, since Disability of the Soul was about a community that really didn’t center medical models at all. While she did interview the psychiatrist in the community, she didn’t center those interviews, and as I recall the psychiatrist mostly talked about how overused psychiatric hospitalization was.
In the talk at SDS, Dr. Nakamura said that she resisted the label of medical anthropologist in part because people were pushing it on her so hard as an automatic response to work on psychiatric disability. “I reject that the medical should be the totality of our experience.” She also touched on a problem that I am sure many of us mad people and allies in academia are way too aware of already–that students with psychiatric disabilities often get offered nothing in terms of accommodations and told that they must take medical leaves.
Dr. Nakamura also gave us a little taste of her next project. I was so excited to hear that she will now be working on trans activism in Japan. She said that when the DSM-III was translated into Japanese, they couldn’t use the term “disorder” because a direct translation would give the meaning “chaos.” (I think disorder would be this word, 混乱, but my Japanese is very bad, so feel free to correct me if I am wrong!) Instead, they used the word for disability. (I think disability would しょうがい, but maybe ふじゅう？) She suggested that trans communities in Japan have organized around a disability identity much more extensively than trans communities in the U.S.
I wonder if that naming in the DSM also had an impact on the organizing of people with (other) psychiatric disabilities. In my experience, in the U.S. and it seems like probably the U.K., a lot of people in our communities have organized under the umbrella of consumer/survivor/ex-patient, mad pride, radical mental health, or recovery movements, often deliberately distancing themselves from larger disabled communities. Of course that isn’t all of us, but I think it is a lot of us. (It may also partly be due to disability rights activists with physical disabilities distancing themselves from us crazies.) And I don’t know—if the term disability replaced the term disorder in the English DSM, I might actually be more concerned rather than more excited about using disability language; it would seem more medicalized to me because the psychiatric establishment would have claimed it. Not that I think it would have been enough to make me want to distance myself from the amazing work people are doing with building disability justice frameworks.
The discussion after Dr. Nakamura’s talk was interesting to me as an outsider among anthropologists. A few people talked about how calling themselves medical anthropologists opened doors for them that had been closed when they called themselves cultural anthropologists. While I respect and agree with Dr. Nakamura’s position that anthropology about disabled communities ought not to be thought of as a subset of medical anthropologist, I realized that if I were an anthropologist, I might be a medical one. It’s not that I think the medical does or should define our experience. It’s that I’m fascinated with all of the ways the medical industrial complex harms us. I’m also interested in the ways that we navigate medical systems, and how some of us can sometimes get useful things out of those systems. That’s actually part of the reason why I like the term “psychiatric disability” as opposed to mental, emotional, psychosocial, or behavioral disability. Partly I like that term because our impairment or difference is associated with our psyches–with what people think of as the “mind” part of bodyminds. And partly I like that term because while some pieces of psychiatry sometimes help some of us, psychiatry is also one of the things that “disables” us–it puts social and institutional barriers in our way, locks some of us, and hurts many of us at least some of the time.
I am excited to read Dr. Nakamura’s next book. I hope that some more people will check out her work too.
And if you want to learn more about what happened at SDS, you can go over to twitter and check out #2015SDS. Most sessions had livetweeting.