Karen Nakamura on Disability Studies and Race

Erica Browne

Erica Browne

Graduate Student Researcher
Event

Friday, February 16, 2018

Provocations are critical to scholarship because they assert, challenge, and move us beyond what is convenient, conventional, and comfortable towards new ways of thinking. Karen Nakamura, UC Berkeley professor, began her February 16 talk in the Research to Impact series with a provocation on the conspicuous absence of intersectional disability studies. Based on the seminal 2006 Chris Bell essay, “Introducing white disability study: a modest proposal”, which foregrounded the displacement of disability issues for marginalized people, Nakamura’s talk explored the dearth of multidisciplinary perspectives in disability scholarship in order to determine if, in 2017, progress had been made in producing more critical disabilities studies scholarship.

To answer this question, Nakamura analyzed book reviews and academic journal articles from the 2017 Disability Quarterly, and found that 40 percent of book reviews and less than 10 percent of articles included the terms race, racialization, Black, or colonized in their titles. Similarly, her review of African American Studies academic journals from the same year revealed that only three of the 36 articles used the terms “disabled” or “disability”, and these limited uses were all in reference to mental health. This revelation—of the simultaneous absence of critical intersectional identities from Disability Studies and African American Studies publications, coupled with the selective framing of disability as a mental health issue—provoked a poignant discussion on the disproportionate representation of Black students in special education, and the ways that Black students are simultaneously under- and over-served because of labels that deny rather than provide tangible supports. According to Nakamura, racism operates by labeling the disabled in education systems, and by using the language of disabilities to further marginalize and displace. For Nakamura, there are also critical connections between labeling and police violence that cannot be ignored: African Americans are seven times more likely to be killed by law enforcement, and the argument of mental illness is often used to rationalize violence, fear, and self-defense without making explicit the role of racism and its impact on individual and community wellbeing. In the absence of critical intersectional disabilities scholarship these and other salient disabilities issues are negated.

Nakamura’s provocation also provided a keen critique of the language used to describe disabilities, which is often euphemistic, patronizing, and uncritical of the physical displacement of marginalized bodies and negation of issues germane to marginalized people. An intersectional perspective can potentially mitigate these effects by producing more nuanced disability studies scholarship, and by evolving the language used to describe disabilities. With a critical intersectional focus, disability studies scholarship can expand and deepen in order to surface the connections between various social, physical, and environmental factors that marginalize, destabilize, and adversely affect wellbeing. According to Nakamura, critical intersectional and multidisciplinary perspectives allow us to approach disability studies with different, more nuanced questions, whereby the limited disability protections available for undocumented immigrants, as well as the toxic environments that produce disproportionately high rates of disease and poor health in low-resource communities emerge as viable and necessary inquiries for disability studies.

For Nakamura, the tendency to exclude from academic research factors that broaden the definition and discussion of disability problematizes the common distinctions made between lifestyle and disability. Within this rigid binary, for example, addiction and chronic disease are treated as lifestyle choices rather than forms of disability, and this particular use of language and labeling affects how we address these issues. 

Karen Nakamura is a cultural and visual anthropologist at the University of California Berkeley. Her first book was titled Deaf in Japan: Signing and the Politics of Identity (2006). Her next project resulted in two ethnographic films and a monograph titled, A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan (2014). She is currently working on the intersections of transsexuality and disability politics in postwar Japan. Her research interests are disability studies, minority social movements and identity politics, civil society, gender and sexuality, sociocultural anthropology, and visual culture.

 

 

Transcript:

Taeku Lee: Today, I'm really delighted to be able to present Professor Karen Nakamura to you. Karen's a relative newcomer still at Berkeley, having come here from Yale University a couple of years ago where she was associate professor in anthropology, and also chair of LGBTQ Studies at Yale. She is the Robert and Colleen Haas chair in Disability Studies, and chair of our Disability Studies cluster at the Haas Institute. She's a cultural and visual anthropologist, who's done some pathbreaking work, most recently A Disability of the Soul on mental illness and schizophrenia in Japan. Today she will be talking about Disability Studies as White Disability Studies/Disability Studies as Intersectional Disability Studies, so please give a warm welcome to Karen Nakamura.

Karen Nakamura: When I was asked to give a talk, I thought well, why I don't just try to use this as a provocation and try engage us into a conversation. I have a title, which is designed as a slightly provocative title, and I'm going to make some statements, which are clear exaggerations and clearly things are not as simple or as defined as I say. This is where I want you to push back and say, "Actually, no, you're wrong. You've stepped too far." The title comes out of ... There's an essay in the second edition of The Disability Studies Reader, which came out in 2006, by a promising African-American scholar named Chris Bell, who unfortunately is no longer with us. His title is the source of this provocation. 

He argued in it that disability studies is really white disability studies. Oh, and I wanted to apologize. For technical reasons, I had large print handouts, but a series of unfortunate events caused the large print handouts to be small print, or nonexistent print, and so that's my fault. If you would like a copy, I know HIFIS is recording this. If it's like previous events, they'll have the recorded version, as well as a transcript on their website, which always makes me nervous as a speaker because whenever you get transcribed you end up sounding like Donald Trump, so always a dangerous thing. I'll try to speak in full sentences for the transcriber.

Okay. Back to white disability studies. The Bigley white disability studies. Chris Bell in this paper, his provocation is that, "Look," and he starts off, "We need to call a thing for what it is." Disability studies to him just seemed very much that it was white disability studies in all of the different ways that one could explore. Of course, this was also a provocation coming in, and commissioned for a book called The Disability Studies Reader. He notes that he wants to call shrimp a shrimp and acknowledge disability studies for what it is, white disability studies. In contradistinction to disability studies, white disability studies recognizes its tendency to whitewash disability, disability history, ontology, and phenomenology.

White disability studies, while not wholeheartedly excluding people of color from its critique, by and large focuses on the work of white individuals and itself is largely produced by a corps of white scholars and activists. White Disability Studies envisions nothing ill-advised with this leaning because it is innocently done and far too difficult to remedy. A synoptic review of some of the literature and related aspects of Disability Studies bears this out." Again, this is in 2006 that he's writing it. In this paper he looks at texts, films, and conferences that were produced in this time span preceding his paper. There are various things.

There was a film, there was a couple of books, Vital Signs, Culture Talks Back; a book No Pity, People are Just, A Matter of Dignity, Changing the Lives of the Disabled; Claiming Disability Knowledge and Identity; Enforcing Normalcy: Disability - in the Body. Then there's a queer disability conference here in the bay area. Those middle four were books, but there's a queer disability conference that was here in the bay area, that I think some of the people in this room attended, and it was noted the conference organizers tried very hard to incorporate people of color, but for various reasons that was not made difficult, and folks who attended the conference felt very excluded.

People of color who attended the conference felt very excluded. People of color caucus came forward. There was a lot of discussions and unfortunately one of the attendees at the conference made a statement, which will go down in infamy. This person said to one of the attendees, "Being disabled is just like being black, so society should stop hating us and give us our rights." You can see what they're trying to say, in terms of the equivalencies of civil rights, et cetera, et cetera but it was just so clumsily said, and so problematic that ... It's being said in a way that sort of makes it clear that the person that was saying it wasn't really thinking that actually there might be black audience members who might hear this, and interpret it in a way that's very problematic.

Then the society for disability studies, the annual conference in 2005 also had a number of problems with their people of color caucus. This was all happening in the span before he wrote this paper in 2006. Oh, and then there's an MRA conference that also was exclusionary. I guess the question is, are we any better in 2018, 2017? I decided to think back and for one, the conference of the Society for Disability Studies was still having problems with representation within the Society for Disability Studies. It hasn't gotten better. At our conferences, this constantly comes up as an issue, and one that's clearly still vexing us.

Leaving the conferences aside, I decided that well why don't I look at journals as a metric to see whether or not disability studies has actually been able to address questions of race. I looked at our flagship journal, the Disability Studies Quarterly and this was a very rough analysis. I looked at all of the articles that were written and published in 2017. There were 47 articles that DSQ published and of them only four mentioned race, racialization, the world black, colonization. I tried a couple keywords such as to see how they might mention race and so we're at just under 10%. You either think that's really great, that's four out of 47, that's really good for us, or you think that's terrible.

Then I looked at book reviews, with the proxy that well, book reviews really, the review editors try to get the key books that are coming out to be reviewed, and so maybe book reviews will be a bit better. One out of 17 of the book reviews looked at issues of race. I then looked at the titles themselves mentioned race, then I looked at the reviews themselves to see if the content of the reviews mentioned race, and then we did better with seven out 17 of the content. Sometimes it's only in passing and clear that it's not really the key force of the book or in some cases, these are edited volumes, and so one of the essays deals with race but the rest of the volume doesn't.

In any case, you can see that disability studies to a very large extent thinking about racialization, thinking about new sectionality is still a minor part of the field so. It's really unfortunate because you think of some of the books, like there's a book that there's a collection of stories about ... Let's if I had the full list. It's a review essay about autism and the entire span of the books about autism, this is the book stories of autism on the Left, none of them at least according to the review, the review doesn't mention race. I don't go in and look at the books to see if they mention race, but the reviewer doesn't mention race in the long list of books about autism that they're talking about. 

There is problems with my method now because this is meant as a quick and dirty. It could be that the books didn't do it and it's actually do a viewer who is trying to remove discussions of race visualization, but I'm using this as a proxy because my thought is really I talk about race than actually would get mentioned. The titles didn't give hints to that nor did her discussion. Then another one about intellectual disabilities, also no mention about race in that text. There are many opportunities that we could have incorporated that we aren't, but I thought well am I just being unfair to disability studies, well what happens if we look at another journal or what happens if we look at the other side, and this is where you can throw stones at me.

Let's look at the Journal of African-American studies and whether or not it mentions disability, so is there just a sort of mutual lack of conversation going on here. I just picked Journal African-American studies as a proxy for a leading journal and in 2017, I looked at the 36 articles that are published and about three of the articles, 3 of the 36 used the terms disabled or disability, but many times it was just in passing. They described the No Child Left Behind law and they would say well it's a law that deals with disability blah, blah, blah, blah, but really it was not dealing with disability in that way they won. Again, this is unfortunate because if you look at the text, there are ways in which that disability creeps in.

This is one of the texts that mentions disability, but in passing what it could've done much more is that I'll read from it. Among all racial and ethnic groups in the US, blacks had the highest morbidity and mortality for our diseases and have higher rates of disabilities and sure that lifespans, et cetera, et cetera, etcetera. It's talking about health, but it's using health without ... This is one a few instances where they use the disability word, they're talking about health metrics without using the word disability. Again, this might be unfair. I mean it's my proxy way of thinking well why are we using health instead of the word disability and so forth. Okay.

Another one, there's a special issue down on prints, and so one of the articles talks ... One of the few times the disability pops up again is talking about C.S. Johnson had written in 1941 about the Emmett Till murder and the quote from 1941 includes the word disabilities both in the city and in the country, the disabilities, which has cast sufferers that is blacks are maintained primarily by a system of force. It's using disability in a in the oldest sense of the word and not the contemporary sense. We're seeing bits and pieces of their word disability, but not in great numbers. Okay. Then I thought well let me then maybe General Patton Lincoln says is unfair, maybe let's look at queer studies, the other field which I feel much better at in terms of poking at.

GLQ is the flagship journal in queer studies or one of the flagship journals in queer studies, and so again I looked in 2017, all the peer reviewed articles so I'm not including book reviews, I'm not including the introduction, I'm not including commentary. In GLQ in 2017, there are just two articles that dealt with disability and one of them was on HIV and AIDS. It talks about the disability caused by HIV and AIDS, and then the second one was really nice essay that was a call Tom's basically saying let's think about sexuality and disability together. There's a slash between dis and ability that I just want to talk about, meander off for a second because it's an important one, because I think to me it indicates something.

Disability, many disability activists have a lot of problems with dis/ability and when you use that term, it indicates a certain distance from the activist community. Why? Well part of it it's a euphemism, differently-abled, dis/abled. We know the euphemisms are really short for you're screwing me and you refuse to admit that you're screwing me, so you're using euphemism for the fact that you're screwing me. It contains amount of patronization in it, right? There are authors who want to use disability, often using the sex that oh I really want to focus on your ability and not on your disability, and that contains enormous amount of patronization.

It would be like maybe I'll take myself into the same hall as the person talked about race at the queer conference, but be like if we said well race, they really have the word ace in it, so there's no race, there's just ace, right? it contains this well oh we're really being very positive about you and isn't that nice that you have a dis/ability. Then finally the problem is because it displaces the focus and that is the problem with disability and differently-abled, right? The reason why the disability community chose the word disabled is because of the social model, disabled people are being disabled by society.

Society is the one that's disabling us and so when people choose to say well no, we're going to focus on ability, it's entirely not understanding the reason for the word choice, and it's an important word choice. When I see that in an academic article, to me it's indicating again that there's some distance from the people on the ground who are thinking and using terms and so it's unfortunate. There's a larger context in which right now disability studies is booming in terms of an intellectual discipline. There's a lot of people washing into it, a lot of people especially who are coming out of different fields especially queer theory who are washing into disability, and many times they are distant from the community.

Well, I'll talk about that in a second so actually the next slide, graduates next slide. I wanted to jump to why does disability studies avoid conversations about race. I think we very much need to have conversations about race but to a large extent, I think we have been avoiding conversations about race. I think one of it is that the reality is that many disability studies scholars are white and many of them are non-disabled, and the reason that they're coming into disability studies and this is one of my unfairness is that because they have a child, a sibling or a parent who became disabled and suddenly they discover disability as a topic and so that's why they're washing in.

They aren't coming in from communities that are intersectional, that have already struggled with questions around language, around power, around representation, and so forth, and so we get a certain amount of naivete with some of the newest scholars who are coming into disability studies. Then the bigger problem, so that's a minor problem, the bigger problem though is that academia is a real fictive meritocracy. We like to believe it's a meritocracy, but it's really not and to a large extent in academia, we like to think well what I mean by fictive meritocracy, we like to think well if you're smart and you try hard, you'll succeed in academia.

To some extent, that's true, but that ignores all the forms of exclusion, all the forms of racism, ableism, sexism, structural violence that go on. We don't often have these conversations and oftentimes we believe that well disabled students, disabled scholars well we have the ADA, we have services like the DSP. If anything, they're being helped more than non-disabled students, so they should have nothing to complain about or they have a leg up. It's the same conversations that often happen and more hushed tones around race happen in very public ways around disability. I think most of the faculty who are here, who have been in a faculty evening have heard various conversations around disabled students that sort of reflect that attitude.

The first point, the ADA has this problem. The ADA is supposedly a civil rights law for disabled people. It has this fundamental glitch in it, which is that as originally in 1990, the ADA says that a disability is something that causes an impairment to a major life activity. The problem is that the Supreme Court in a number of decisions decided that working is a major life activity to the point in which it became a catch 22. If you could work, then obviously don't have a disability and the only way you could show you have a disability is by not being able to work. If that's a case, well then really no ADA employment suit is going to succeed because if somebody's working, then they're not disabled.

If they can't work, well then they're disabled and they can't work and thus, the exclusion is not discriminatory. That's played out within the university setting as well. We have then have problems where the disabled people who are in academia were relatively select bunch and activists and general kick-ass community scholar, Corbett O'Toole, has called them the able disabled. I'm not sure about that language and I have mixed feelings about that language, but I think another way to say it, I'm not sure if that's better, any better, people with non-apparent disabilities or non disabling disabilities and I'm not sure if I'm then getting myself into the same catch 22 that the Supreme Court sort of dug itself into.

Generally, the people with disabilities who are able to succeed in academia tend to be the ones with either non-apparent disabilities and we're hiding it, was sucking up in particular ways or are disabilities are ones that with various things were able to at least succeed or partially succeed in this fictive meritocracy, but the reality is is that there's a ton of people who are just adjuncts, who are lecturers, who are not able to succeed in the tenure track market, who are disabled. Then ask Kim Crenshaw says we're all ... Then the question is where are the intersectional scholars and Kimberly crenshaw has said that intersectionality is the ability to be run over twice and standing in an intersection get hit from both directions.

That's really the case with disabled scholars, so disabled scholars of color are really like the double intersection of getting whammied on race and getting ranked whammied by disability. They are really absent in academia. I think that's part of the some of the reasons why as a field, as scholars, society disability studies really has had trouble pulling in compositions about about race. When we think about the various disability civil rights laws starting with the Rehabilitation Act, the Individual with Disabilities Education Act, the ADA, all of these laws are really targeted and benefit a certain model of person, the ideal citizen.

The closer you can get to being a white heterosexual married able-bodied, white collar, middle class, english-speaking, non-disabled male, the more that the laws really are suited towards you. That's the model that the legislature has had in mind and the more you drift away, the more complex, the more difficult it becomes for you to accrue any of the benefits.

Again, we think of the ADA and at least in terms of employment, the person who really benefits is well this notion of heterosexual man who's using a wheelchair but has a law degree and so can just roll into the courtroom and say their briefs and then roll out, and that is all great that, that because they're white color in a profession in which the ability to or read and speak and to think is valued, they are doing just fine, the ADA can protect them but the ADA doesn't protect people who fall out of that, right? If you're a female and disabled, the employment rates are terrible or if you're a black and disabled, the employment rates are terrible.

If your disability happened at a time and impeded your ability to go to school, your employment rates are horrible. Pretty much any sort of thing that will drift you out of this charm circle of the white heterosexual male pushes you out of the scope of any of the laws that are designed to protect you. Yeah.

Seth: Could I add one?

Karen Nakamura: Yeah.

Seth: I'm just thinking about a friend and research and a [locator 00:24:38] of mine. The other thing that relates is immigration status.

Karen Nakamura: Yeah, immigration status. Thank you.

Seth: This friend is equal in the State of California to apply for things related to state disability that's temporary but not for federal because of their immigration status.

Karen Nakamura: Yeah, yeah so thank you Seth. Okay. Amongst my qualifications, I think it's fair to ask so I had previously given stats on well why should African-American studies in engage in conversations with disability. A couple months ago sue Schweich organized a really fantastic conference here called Academic Ableism, and one of the speakers was Wanda Blanchett. She was talking about the disproportionate representation of African-American students in special education and as in many things, African American students are both over served and underserved.

The mechanism in which the structures of racism occur are in their labeling as requiring special education services or being labeled as second language speakers and being shoved off into tracks, which would not lead into college, at the same time that they're being underserved because the actual special ed tracks that might need to focus tutoring and other services, for example, for learning disabilities aren't available to them, right? They're being labeled with particular labels that don't get them services while being prevented from being labeled appropriately in ways that might actually get them services that they might actually be able to use.

This though because it's education has this lifelong effect that the way that racism is operating in our school systems is through the mechanism of disability labeling. I think we need to think carefully about that one could say well it's just racism, but the racial categories are being now changed into disability categories, and that is I think the process by which we being the United States as a whole is making our racism tolerable by using the language of disability. Let's see, this quote from her. African American students are disproportionately referred to and placed in the high-incidence special educational categories of mental retardation, emotional or behavioral disorders, and learning disabilities.

Once labeled as having disabilities and placed in special education, African American students make achievement gains and exit special education at rates considerably lower than those of White students identified as having disabilities. Third, although the field of special education has moved toward more equitable treatment of students with disabilities by advocating for inclusive general education placement, many African American students who are placed in the less subjective, low-incidence categories of developmental disabilities are educated in segregated, self-contained settings with little or absolutely no exposure or access to their non-disabled peers or to the general education curriculum.

Also in Blanchett's criticism is that by and large the field of education has been mostly a white field and because of that, because the teachers who are coming in, the teachers who are teaching the teachers, the superintendents who are monitoring the teachers are coming out of particular educational circumstances that making them not look at racial categories but also disability categories appropriately this form of structural racism and academic ableism is there to continue. There's another area in which we also want to think about disability, right? Right now we have this enormous problem where African American youth are being killed by police, African American young men are being killed by police, right?

They're being killed at a rate that's about seven times that of the average population, hugely problematic. This is a conversation about violence in the US. It's coming in the aftermath of yet another series of school shootings. I want to focus on one element though which is increasingly in a lot of police homicide incidences, they're now saying to use the argument of mental illness as the rationale. Right now it's just about above 25%. Oh we thought that that person was mentally ill, that's why we feared for our life, that's why we shot them and I would hazard to guess that this is increasing, that it's a particularly effective rationale, right? We see that rash now being used to talk about the shooter in Florida, right?

They are mentally ill, and the mentally ill are being constructed as this category of people for whom one can have rational fear for one's life and that's homicide. It is entirely justified because if you don't kill them first, they will kill you. I am hesitant to guess that I don't have the statistics for the racial black breakdown of this category of people against the racial category of folks as a whole, but I would hazard to guess that African Americans are representing like many things, over-represented in this chunk because it becomes this again non-racial way of talking about fear about, talking about the self-defense and so forth. Okay.

We saw that in 2017, 2016, there were a lot of prominent murders of ethnic American young men, and so a number of the journal articles that did hit in section of African American and disability. We're talking about young African American men who were disabled and then shot. We then also have this problem that when we use the word disability, we often don't include things that we really should and Seth Holmes who had just commented has been a really great book talking about the disability that illnesses caused by environmental toxicity in migrant farm workers. Those often don't get manifests, depending on the label that the farm worker or often they're not diagnosed.

We often in a sphere in disabilities when you think about well who is disabled, who do we want to write about, who do we want to talk about, what we label as disability studies, environmental toxins often do not fall into our preview except when it affects one of the communities that are close to us. We might think, for example, in Flint Michigan and other communities, the high levels of lead and other toxins and the considerations of that on the long-term health of many youth. We often don't think of, for example, diabetes is existing within the purview of disability, right? Often it's viewed as a lifestyle illness and so would diabetes be considered well within disability studies, but diabetes has 

... Part of the reason might be that diabetes has disparate impact between different communities, and so is the reason why we excluding it because well it's not impacting the core of white disability studies and the kin are white disability studies since our that's not included. Alcoholism and other substance abuses also are they being pushed out for our particular ways. Now again this is all unfair, right? Perhaps now it in the current moment, we are moving towards it, but again this is designed as a provocation and more of a let's hurry up and actually get to this point where we can talk about these issues. Okay. What would then good intersectional disability studies look like? Well, I think it's already happening.

In many ways, we've always already had people who are talking about intersectional disability studies saying boy algae Lords how hopeless was thinking through what does someone who is legally blind who didn't speak, her autobiography was about this collision between this different disability categories. The bridge called me back also had stories of disabled women within it. We've had these within at least emissaries, these cortex that have dealt with race gender and disability, but these often get read in ways that erase some of those particular categories when the convenient to be erased. One, we maybe need to recover our text.

Two, I think there's number of really young scholars and I guess they're no longer young anymore and Nirmala Erevelles is one of them who are really dealing with this head-on and they're becoming really kick-ass within the community. This article Unspeakable Offenses: Untangling Race and Disability in Discourse of Intersectionality really, really provocative, really pushing us in new directions, highly recommend if you get a chance to grab a copy. Liat Ben-Moshe is also another scholar who's written about race, gender and disability, and so this is another one in women gendered families of color. Then I was missing one more slide, which was also about some other young scholars, but it is happening. 

These conversations are happening, but still there's going to be this lag before they've really pushed it into the main four. That's sort of where I wanted to end and I'm now ready for all the flurry of people to tell me just how long and unfair this presentation was, so launched away. Thank you. Yeah Anne.

Anne: Let's start with this approach of care, but I thought this was a great job and I have no argument for anything that you said. I would love for us all to talk more about the Florida shooting and about the assumption of mental illness and I mean what you mean is better mental health care and maybe locking people up. I don't know if you have thoughts about that or other people may have thoughts about that, or maybe that's not wrong. 

Karen Nakamura: Yeah, yeah. I mean in that cases as well as the New York shootings that they're both being classified as either mental illness or artistic. We see these two categories being used to identify the subject as potentially dangerous, potentially hostile. Yeah, it's hugely problematic and from the disability community standpoint, we have trouble intervening in those conversations in an effective way. Yeah, I'd love to open that up. [Takiya 00:36:30].

Takiyah: Don't want to shift the dialog unless you really wanted to engage in that, but I appreciated the slide that she brought up that showed the justification of mental health or particularly African Americans being, the justification of homicide, I'm using that tone and I'm curious to hear more about your thinking of like why there might not be more dialog between the two subjects based on the fact that African Americans were constitutionally divided as less than humans. I think part of the scholarship of the African American studies was to establish as sense or move far as far away as possible ...

Karen Nakamura: Exactly.

Takiyah: From this idea of being less than ideal human or accountability and so I'm just curious about how you might have thought about and consider that as a way that could potentially create a boundary that's difficult to shift.

Karen Nakamura: Yeah, exactly. One of the books I wanted to highlight but didn't make its way into my slide deck is a book called Protest Psychosis, which looks at the shift between how schizophrenia was framed. It used to be framed as a white woman's disease very early on and so you had photographs of women in Sanatoria knitting or at the town's fair sort of waving to people. Then in 50s and 60s, it started to be switched into a disease that affected African American men and made them angry and rebellious and didn't respect authority. We have shades of drapetomania in there, and so that shift I think is one of the reasons why it's hard from that, there's issues ...

Again, this might be unfair to say ... I'll say it differently. Within the gay and lesbian community in the US, we've tried very hard to disabuse any notions of mental illness and relationships with gay and lesbian or trans-identities, right? There's a long legacy of psychiatry being used within gay and lesbian communities as a way right conversion therapy and others to force in lesbian individuals into institutional settings.

There's this hesitancy to talk about categories within the queer community that overlap with mental illness, and I think there may be a similar hesitation within African American communities about a long history of the use of psychiatric labels in ways that are abusive and reflective of racism that then do not allow the reclamation of people who have psychiatric disabilities to really be pulled in and owned and say we need to protect those who are labeled with as having psychiatric disabilities. Yeah Denise.

Denise: Yeah. Thank you for your talk and for the publication. I don't think the paradox of setting up here is just specific to disability studies. I mean I think academia in general is eurocentric and it's white. I mean I encountered this when thinking about say how are we looking at sexual and gender fluidity, does it look the same for people of color particularly in a global context. If we think about something like disability, how does that even construction it, what does a child with certain capabilities look like in totally different culture. I mean this culture has had a history of marginalizing and sending people, institutionalizing its kids and it's disabled. That doesn't happen anywhere.

I mean I was talking someone about they were saying that in Africa, for example, kids that might be institutionalized here learn many languages, they function as foreign community. I don't know what's happening contemporarily, but I don't know that they're different cultural and class looks at something like disability just as there are with what a sexuality look like in a different context. I struggle with like teaching race in general and opening up a space. We're talking about something from a non-eurocentric view and I think that's where we have to look very carefully socially and cultural construction.

Karen Nakamura: Yeah, yeah, I entirely agree. I mean this is a problem within many fields that we are strongly embedded in our context. There aren't many for example disability studies scholars who go abroad and part of it is all the forms of academic ableism, might with going abroad is enormously taxing on the body mind, and if you have a disability doing that in another setting is often something that isn't doable. As a result, disability studies has this parochialism that's not good. I mean we often don't think about other alternative systems to the ADA and we get locked into the specifically American context, but this works against many different contexts.

When I was chair of LGBTQ studies at Yale, if we take that sort of the string of alphabetic letters, how do we really map it into foreign places, how do we support work that is being done in other context without engaging in what Joseph Massad has called gay international. It's like we are going to label you the lesbians of X or the trans of Y and sort of also engaged in the work of flattening categorical difference in other places. Some people would really like that and the issue I had when I was chair of LGBTQ studies was all my money was coming in from rich gay men who really wanted us to be trans-historical and trans-culturally.

Those are the gays, those are the gays, that's a gay, he's the gay, historically and say oh we had gay ancestors and we have gay kin over there. That's why they were giving us boatloads of money because they thought that that was an important project was this sort of what's often called the gay cartography. Let's all map gayness trans-historically, trans-culturally and so that we can claim as a very colonial move and we see this in multiple disciplines. That's exactly why I think we need more conversations because disability, the categories are viewed differently and maybe Don will feed into that.

Don: Yeah, thanks for your talking, the wonderful comments. Your comment that you know each other better, the talk later. Your comments really brought back a really great book from 1996, the Rejected Body by Susan Wendell. She starts her book about gender and disability by an example an African movement in the way the businesses that she can walk and this is then we expect in American woman who walk in their lives and who is disabling that situation. I think it's a great example of culture, race and disability and gender. I mean all together it's really where first few data so it's really main thought of that.

I think it's a great comment and someone who is not studying disability in the US [inaudible 00:44:21] as well. I also wanted to bring up the book that it think is the one book that has race and disability in the title and I would guess it's Ellen Samuels' Fantasies of Identification, came up in 204. That's a really wonderful book to the highly theme and so wonderful to speak with, so I'm really thankful for that. She really talks about the fantasies of identification, what we think about who is the person of a different race, who is the person with a disability, and then there's also another great book about Disability and Passing and how passing really translates from race and disability as well.

I think this whole idea of social construction and the fantasies of identification is something that you're not exposed category and the fact that like people staying away ...

Karen Nakamura: Yeah, exactly. I think also another ... Some of the slides are not there. Didn't mean to mean that the text I introduced are comprehensive, but another thing that's also happening or has been happening for the last 40 years is the use of various categories ways of virtue signaling of inclusivity. Disability has become one of those mechanisms of virtue signaling. We are inclusive, we are welcoming. One of the ways we will show that, for example, is have, and this has been going on for a long time, have a sign language interpreter who is standing right by me. You can all see I have a sign language interpreter and aren't we all great and inclusive.

If you actually talk to a deaf person, they don't want the sign language interpreter on the stage next to the speaker. They want them right in front of them and hopefully have engaged in conversation, so that the interpreter knows what the actual style of conversation that the deaf person might want. That doesn't do any good for PR, so we often see in large events sign language interpreters who are used as virtue signals and we see these types of virtue signals multiple times and those also operate in the same ways. At least in Japan, much of disability, the way that disability has been able to flourish is because it serves as an important proxy for inclusion.

Japan doesn't have a great ability to talk about inclusion because it often denies any sort of diversity, but one that a can doubt is disability. We become what David Mitchell and Sharon Schneider have called narrative prosthesis. Disabled people become this sort of tool by which other things get resolved or other things get shown, and so showing the inclusivity of disabled people then becomes this proxy oh aren't we a really great society and we see this multiple times. In the Facebook memes, we've all seen things that the disability calls inspiration porn.

It's like oh my god that kid with Down syndrome who got to sit next to the Pope, isn't he such a wonderful person for being inclusive of a child with Down syndrome, right? Inspiration means float daily around the net and become this way for us to all feel good. Josh.

Josh: Certainly don't want to part this memo of what you've done which I think is very interesting. I just wonder if you could sort of on your feet literally for a moment write a different paper, the second paper here which is the quantitative methodology was really interesting and laying out the problem. I wonder if you could sort of shift to a qualitative mode an talk about epistemological intersectionality, so how you see the influence of how basic terms get defined through these both the residences who can be implicit or sometimes the lack of intersections between these different sets of issues. How does that shape the basic ways in which we could think about the sorts of issues that you want?

Karen Nakamura: Yeah, and I think that was what I was trying to do. One can make an argument that how race and racism in the United States has operated has been confined around particular categories of defining African American as subhuman, and the way that that has been done around biology have tones of disability. The example of drapetomania was one of them, right? One could have this argument that actually race and disability have always, always, always already been defined around similar terms and many good works, Schweich amongst them that have shown this sort of thread to various threads through history around which racialized categories have been layered onto or disability has been laid onto racialized categories in ways that mask the racism that's in there.

It's only when disability became a category that when the openings came up in the 60s and 70s, we're talking about it as a particular type of civil rights and a particular type of disabled person managed to emerge that wasn't associated with them that disability managed to flourish in a particular way. I think you could do that threading. For my own current work, I'm trying to think of queer as a disability category in the context of trans and what it means for the trans movement to think of itself as a disability category. It's I think possible in the context of Japan because we don't have that association with mental illness, and so there is no pushback in that sense.

Trans-people can articulate themselves as a disability category, whereas it's much harder here, so it's possible but this is sort of my appeal for surpass cultural understandings because it gives us this way of thinking through different categories and different contexts. Yeah, Sue.  

Sue: It's nice to be thinking about something I've been dying to ask you about and it's related to your question too. I don't know how many of you have heard about this article by Kimani Paul-Emile. It came out in [inaudible 00:50:48] this month. African American legal scholar, it's called Blackness as Disability? When she's arguing, first line of the abstract is recent incidents of police violence against unarmed African Americans in a lead-filled water of Flint Michigan are only the most recent reminders. It goes on to argue, understanding the black racial designation as disabling can bring new clarity than the reality that racial categories in the United States will create an explicitly benefit some and disabled others and arguing for the use of disability law as the primary mechanism to combat racism. 

Of course, I have 50 responses to this including thinking about the word disability like Disraeli in the 19th centuries talking about the disability of the Jews and the word disability is first used as a word that means legal oppression. The second thing I thought of course was intersectionality about how this argument just seems as far as I can tell it's really read say of like this people woman, I mean I don't know where it fits, but the third thing I thought about is how interesting disability wise and civil rights law because it does stand in the level playing field. It has a really different model and it does potentially seem tremendously productive, and I thought about your work on trance.

What was interesting about this article is that basically from at least three positions, it was just loud, critical race scholars here because disability must feel like a wrongful accusation. It's like the way eugenics gets attacked by thinking nobody actually deserves that ...

Audience: Exactly what he was saying.

Sue: They were all just poor people or whatever, wrongful accusations so we cannot have it. Then from a disability one, it seemed like collocation and obliteration. There was almost no way for it to be heard as an interesting argument and yet I've got to say I find it tremendously provocative.

Audience: Yeah, yeah and that's all my tiptoeing around, really wanting not to step too far too into an overstatement, which would then get blown back in my face. Yeah.

Sue: Did you see your work as aligned with the ...

Audience: Yeah. Part of it is because I've drunk the kool-aid and part of it as the hash trend disability says, I feel like ha, ha, ha disability studies is the metric by which we can analyze everything and let's be of real colonial power in that regard. I'm problematically colonizing other categories with disability as the overarching one. Yeah, yeah, so that this was a ... Yeah, and I'm a little bit cognizant that other one, very cognizant of that as a colonial move to say these categories can understand as disability categories, although I would try to be a bit more self saying that structural racism has used disability as a functional method.

If you want to understand racism, we need to understand the categories of disability, disablement that racism creates in order to justify the particular types of violence and mistreatment. Yeah. It's very difficult to say that, and I'm really glad this is on video and being transcribed and put on the web.

Sue: Thank you. I feel like it's so important just like that gratitude because you were putting yourself in the space to all to say in order for this kind of conversations to collide, somebody has to be willing to just start it. I feel like that's what you're doing and I really appreciate that, just the level of complexity. For me when I'm taking one is there's another layer of conversation that now has to happen because we're talking about just the obsession with categorizing people and trying to understand how the individual can show up and operate in society based on secular categories and develop strategies and methods for those people to exist to what end or what cause, right?

There's something above that as required the obsession with me and to define and operate in a particular method or mode that works to me and something that's work this from others. I just want to give the gratitude to say like I get what you're doing and it's a very brave thing, so very collective disability thing.

Karen Nakamura: Thanks. Appreciate that. Yeah.

Audience: I was just goin to say that I think one solution because for me, thinking about the fact that so many people do not matter, that the strategy is to move away from whiteness as a reference point. Once you do that, then I think it opens up what does the lens of race and ill-health look like because there's just so many examples of I mean diabetes. There are some groups that half of them are going to have diabetes, 50% of population and the amputation rate for Native Americans as starting point high as of that whites. In Indian country, they build the bungalows with the ramps. Everybody's boggle has a ramp because you're going to need one.

I think to me this is a critique about racism as much as it is about another field and that we need to just de-center or re-center on those questions. I think in public conscience, these are the crucial questions that they're really important for the whole society. I mean it's not just about black people or disabled people, it's about America.

Karen Nakamura: Yeah, yeah. One of the reasons I moved out of queer studies into disability studies was because of the ability to talk about the body in productive ways, and this is maybe my unfair reading of both queer and feminist that we really haven't thought about the body too much. Now there is [Sir Ahmed 00:57:36] is going to talk today about [grief nominology 00:57:37], et cetera, et cetera. Now it's time to get, but when I was doing my graduate career, that move was how can we talk about the body in ways that we can think about productively. Part of it was thinking about epidemiology and thinking, for example, with the deaf community. There is both sort of physicality.

My first book was on the deaf community and identity, and there's a physicality to deafness, but there's also this identity aspect. The two are really tied together and you need to think about institutions. You need to think about rubella epidemics. You need to think about structures of power. All of those complexities go in a way that makes the body both something that acts in the world in particular way, but it's also acted upon in particular ways.

That's what I like about disability is that we can't ever sort of let go of that tension and that there's a tension between a politics, which are arguing for our civil rights and our need to be treated equal equally, at the same time acknowledging that for many of us our body minds are not functioning at the level that we want them to, let alone what society expects of us or are functioning in different ways and how do we take apart those contradictions, but many ways recognizing that this notion of function is embedded in all these complex systems of power and what it means to function and when it means to function in particular ways are all highly problematic.

That's why I like about disability because I feel like ... We have an activist community that's always on our butts in particularly productive ways that I think is useful. I think we're stowing in engaging good discussion and we get our butts kicked in productive ways by the activists who are arguing and are smiling to us and in many ways, for example, allowing us to drift too much into high theory utterly disconnected, pulling us back down. Yeah, again I'm trying to sell the kool-aid here to you all. I think that is what ...

Marsha Saxton: Can I?

Karen Nakamura: Oh yeah ...

Marsha Saxton: If I may ...

Karen Nakamura: Marsha Saxton.

Marsha Saxton: Oh here open line was so interesting to me and if you don't mind my being provocative, what do you anticipate on a privilege audience like this to not be able to tolerate of what you raised?

Karen Nakamura: Oh, I think that my concern is that oh no, we've always been thinking about race, but we coordinate off in a nice easy way if that doesn't help. Yes, we think about race in these texts and as long as we contain them within these texts or within these populations, it never has to engage in our other sort of sorts of discussions. It would be a bifold. Yes, we're talking about it, but underneath that would be we're talking about in safe ways. My provocation was this twofold one, which is no, we're not talking about it enough as well as if we really wanted to deal with it fully, we have to do in a way that sort of complicates everything, that it's not something that you can just take out and cordoned off, so that was perhaps some of the things that ours ... Perhaps anticipating what someone would say well we do deal with it, we have these texts, dah, dah, dah, dah. Yeah.

Audience: I'd pick up on that and respond to your very there and nuance sharing of insights with a very unfair and offensively banal question, which is the researched impact question. Picking up on one of the insights I take on your presentation what we see and read and know inscribed in these disciplinary field text depends a lot on who's doing the production, and so suppose in some fantasy land, our Chancellor has stumbled onto the website and encounters your presentation and completely convinced by it and then this is where the bad part comes in. He comes up to you and says, "Okay resources are no problem here. I want you to design something so that Berkeley can be a flagship institution that really addresses this thing void that you have identified." What would that look like?

Karen Nakamura: Yeah. If campus gave Heifetz one-tenth of what it's spending on intercollegiate athletics or maybe even 1, 100 of what it's spending on intercollegiate athletics, I think the main thing I would want is more of these conversations. I feel like when I had first seen Heifetz when the job ad came, when Catherine actually sent me it, and I thought wow this organization at UC Berkeley called the Haas Institute for a Fair and Inclusive Society and this is its mandate, I was just blown away. To be honest, I was expecting more conversations across the clusters and more of a central space in which those conversations could happen. 

I think a lack of space of sort of community, communal sharing has allowed us to each think oh I'm doing diversity, I'm doing this, I'm doing this, and not have to cross over. I think this is what I'm going to in Japan we say grind the sesame seeds. American has a much more vulgar term. I'm going to grind sesame seeds by saying at least some on your stewardship, I think we've had more of these conversations. I think when we get that budget 1, 100 of the intercollegiate budget, it would be to have a place structured may be similar to towns and how they are trying to foster those conversations both amongst the faculty but the grad students as well.

Audience: It almost feels like you and I rehearsed that. 

Karen Nakamura: We did. 

Audience: Say something about that there are a couple of things that don't cost anything I think that I would just so love to see. We just got this amazing agenda for the Haas Institute and it's sweet. I read with just joy of these projects, maybe all those projects have been in contact with Karen and then we need to just have better conversations among ourselves. I was really thinking is disability an active consideration in every one of those projects, did people actually made sure to conceptualize disability as a problem within them to include disabled scholars off the campus and non, or to take another example. I put out a talk about purchasing on that and not, not just virtue.

I put out ads about this talk by Karen and I added even language about its wheelchair accessible, sets free, et cetera because the generic Haas publicity for every event that happens doesn't say it's wheelchairs as well, please don't wear a sense, here's the person you content for ASL. This should not be something that is ever only in event that has to do with the disability studies program or disability research cluster on this campus, and yet it is. It doesn't cost a penny. 

Karen Nakamura: Mm-hmm (affirmative). Along with disability being this mechanism for thinking of two various categories I would include ... I mean same thing, let's think about race through all the categories that they feel about poverty through all that, educational barriers, healthcare, and so forth through all of them, and I think hopefully those are sorts of conversations we can have at IFES as we sort of go into the future. Okay, so thank you everyone.

 

Karen Nakamura is a cultural and visual anthropologist at the University of California Berkeley. Her first book was titled Deaf in Japan: Signing and the Politics of Identity (2006). Her next project resulted in two ethnographic films and a monograph titled, A Disability of the Soul: An Ethnography of Schizophrenia and Mental Illness in Contemporary Japan (2014). She is currently working on the intersections of transsexuality and disability politics in postwar Japan. Her research interests are​ ​disability studies, minority social movements and identity politics, civil society, gender and sexuality, sociocultural anthropology, and visual culture.

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