Wednesday, January 25, 2017
Engineering 2, Room 599
Science and Justice Visiting Scholar and UCSC alum Alexis Shotwell, Associate Professor of Sociology and Anthropology at Carleton University, will be in conversation with Jess Neasbitt (History of Consciousness, UCSC) about politics, movements and ethics in her new book Against Purity: Living Ethically in Compromised Times. Against Purity proposes a powerful new conception of social movements as custodians for the past and incubators for liberated futures. Against Purity undertakes an analysis that draws on theories of race, disability, gender, and animal ethics as a foundation for an innovative approach to the politics and ethics of responding to systemic problems.
Best Canadian Documentary, Hot Docs 2016
“TRANSCENDENT… epic spectacle. […]She lets the camera hunt for art in every frame, mining veins of abstract beauty rather than sharp nuggets of political narrative” Brian D. Johnson, Maclean’s
“ASTONISHING, stunningly beautiful. […] Equal parts sigh, song and cry.” Linda Barnard, Toronto Star
“BREATHTAKING, gripping. […] Finds beauty in unexpected places.” David Perri, The Northern Miner
WINNER of the Best Canadian Film of 2016 at the HOT DOCS Intl’ Film Festival, KONELĪNE: our land beautiful brings its sensual and visceral ride to UC Santa Cruz:
Monday, January 23, 2017
Humanities 2, room 259 4:30PM
KONELĪNE Trailer: https://vimeo.com/180675200
Celebrated for using art to seek beauty and complexity where you least expect to find them, KONELĪNE (pronounced Ko-na- lee´-na) is garnering rave reviews for its fair-minded and cinematically stunning exploration of northwest British Columbia and the extraordinary people who move across that land. Set deep in the traditional territory of the Tahltan First Nation, KONELĪNE captures an epic canvas of beauty and complexity as one of Canada’s vast wildernesses undergoes irrevocable change.
Directed by award-winning filmmaker Nettie Wild, KONELĪNE delights in exploding stereotypes with scenes of breathtaking spectacle. Heidi Gutfrucht, both a big-game hunter and fierce environmentalist, swims her 17 horses across the unforgiving Stikine River. A Tahltan First Nation diamond driller bores deep into the same territory his elders are fighting to protect. And a white hunter carries a bow and arrow while a Tahltan elder shoots moose with a high-powered rifle.
Cameraman Van Royko won the 2016 Award for Best Documentary Cinematography from the Canadian Society of Cinematographers for KONELĪNE, which is shot and projected in wide screen with surround sound.
KONELĪNE: our land beautiful is a cinematic poem that cuts through the rhetorical roar of our times. It’s turning heads and changing minds. Don’t miss it. 96 mins with conversation to follow.
KONELĪNE: our land beautiful is a Canada Wild production, produced in association with Telefilm Canada and the Rogers Group of Funds through the Theatrical Documentary Program; Super Channel; Canal D, a division of Bell Media Inc.; Knowledge Network; The Canada Media Fund; developed in association with The National Film Board and Creative BC; produced with the participation of Rogers Documentary Fund; the Shaw Media/Hot Docs Completion Fund; the Canadian Film or Video Tax Credit; and the Province of British Columbia Film Incentive BC.
Kim TallBear (University of Texas, Austin) discusses how genomics forms along with notions of race and indigeneity (the topic of her 2013 monograph, Native American DNA) and the novel roles that Native geneticists are playing in intervening in these processes to create a more just and democratic approach to genomics.
Co-Sponsored by the UCSC Genomics Institute and the Center for Biomolecular Sciences and Engineering.
To view the video documentation of this event, click this link. Or — listen to the event below:
As part of the Science and Justice Research Center’s efforts to develop analytics for understanding and enacting ‘science and justice,’ we hosted a half-day long symposium that features the work of Charis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies, UC Berkeley) and Ruha Benjamin (Assistant Professor in the Center for African American Studies, Princeton University). In their respective works (Good Science: The Ethical Choreography of Stem Cell Science, University of California Press; People’s Science: Bodies and Rights on the Stem Cell Frontier, Stanford University Press), Thompson and Benjamin provided us with an excellent starting point for our collective efforts to conceptualize and enact ‘science and justice.’
This event included a morning reading group and an afternoon presentation by the two speakers, followed by discussion with a response from Julie Harris-Wai (Assistant Professor, UC San Francisco and Associate Director of CT2G).
Ruha Benjamin (Assistant Professor, Center for African American Studies and Faculty Associate in the History of Science Program, Princeton)
Charis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies, UC Berkeley; Professor of Sociology, London School of Economics)
Respondent: Julie Harris-Wai (Assistant Professor, UC San Francisco; Associate Director, Center for Transdisciplinary ELSI Research in Translational Genomics | CT2G)
This event was co-sponsored by UCSC Departments of Politics, History of Consciousness, Feminist Studies, WiSE, and Sociology.
The event is also sponsored by UC Berkeley’s Center for Race and Gender, Politics of Biology and Race Working Group, and Gender and Women’s Studies Department as well as UCSF’s Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G).
Organized in part by Visiting Scholar Tala Khanmalek.
The medical industry leans heavily upon a distinction between the "normal" and the "pathological." How and why do we continue to define this distinction, and for whom are these categories useful? What are some alternative ways to organize the lived experiences of human bodies and/or minds?
A Panel Discussion with Janette Dinishak (Assistant Professor of Philosophy at UCSC) Kelly Ormond (Professor of Genetics and Genetic Counselor at Stanford University) Matthew Wolf-Meyer (Associate Professor of Anthropology at UCSC and author of The Sleeping Masses).Organized by Science & Justice Training Program Fellows Sandra Harvey (Politics), Linda Dayem (Philosophy) and Jessica Neasbitt (History of Consciousness). Co-Sponsored by UCSC Departments of History of Consciousness, Literature, and Philosophy, as well as the Institute for Humanities Research.
Kelly Ormond is a Professor of Genetics at the Stanford School of Medicine. While Ormond's primary role is to direct the MS in Human Genetics and Genetic Counseling program, her research focuses on the intersection between genetics and ethics, particularly around the translation of new genetic technologies (such as genome sequencing or non-invasive prenatal diagnosis) into clinical practice. She is especially interested in patient decision making, informed consent, and the interface between genetics and disability.
Matthew Wolf-Meyer is an Associate Professor of Anthropology at the University of California, Santa Cruz. He received his Ph.D. from the Department of Anthropology at the University of Minnesota, specializing in medical anthropology, the social study of science and technology, and neuroscience. He is author of The Slumbering Masses: Sleep, Medicine and Modern American Life (UMN Press, 2012), which focuses on sleep in American culture and its historical and contemporary relations to capitalism. His second book, What Matters: The Politics of American Brains, focuses on the ethical and epistemological practices in contemporary neuroscience, cybernetics, disability activism, and psychoanalysis in American society. Currently he is in the early stage of a new project focused on the neurological turn to the gut as an extension of the nervous system, the history of shit in the United States, and the therapeutic uses of human excrement in modern medicine.
April 22, 2015
"Fixing the Pathological Body"
SJWG Rapporteur Report
22 April 2015
Rapporteur Report by Jess Neasbitt
This event was organized to begin what we hoped would be ongoing discussions that addressed
themes and questions like the following: "The medical industry leans heavily upon a distinction
between the "normal" and the "pathological." How and why do we continue to define this
distinction, and for whom are these categories useful? What are some alternative ways to
organize the lived experiences of human bodies and/or minds?" We invited Drs. Dinishak and
Wolf-Meyer and Professor Ormond to introduce their research and engage in a panel discussion
regarding these questions, as well as those asked by the audience.
After a brief introduction of the panelists and the overall event theme by Jessica Neasbitt, Dr.
Dinishak spoke about her interest in issues surrounding “deficit attribution.” She forwarded this
model as a specific form of pathologizing difference, and encouraged the audience to consider
what (or whose) standard is being used to assess the lack, or absence of a feature that a person
“should have,” that is a hallmark of “deficit attribution.” Dr. Dinishak is interested in calling the
moral complacency surrounding this decision into question, as well as bringing the narratives of
the pathologized into the conversation. This led to a brief overview of her research regarding the
narratives of autists, which involves qualitative interviews, and speaks to her stated commitment
to finding responsible approaches to engage in such research in ways that acknowledge subjects
as “not just objects to study.” Instead, Dr. Dinishak encouraged the audience to consider what the
narratives of autists can teach us about the lived experience of those labeled autistic, the cultural
representation of these individuals, and what their (autists) concerns might be.
Following Dr. Dinishak, Professor Ormond discussed how disability is talked about in genetic
counseling. Building off of Dr. Dinishak’s talk, she mentioned the challenge of mixing lived
experiences of people with disabilities with discussions of risk assessment during counseling
sessions. She is interested in starting conversations that focus more on the former than on the
medical aspects of potential conditions a fetus may develop in order to move past parental fear
and into a space of more expansive possibility. Professor Ormond stated that, at the present time,
potential parents most commonly focus on the medical aspects of potential disorders/disabilities
over the lived experiences of those diagnosed with them, and this often leads them to constrain
their choices to either abortion or bringing the baby to term and keeping it (versus adoption and
other possible options).
Dr. Wolf-Meyer also discussed social fixes in contrast to medicalization, and gave examples
from his para-ethnographic work. Most of his examples involved the tendency to medicate rather
than seek social fixes, which often require the rethinking—and perhaps radical changing—of
powerful institutions. The influence of capitalism was a recurrent theme, not only during Dr.
Wolf-Meyer’s presentation, but throughout the panel discussion and the question and answer
period; however, the “normalization” required of subjects in capitalist societies was integral to
several key aspects of Dr. Wolf-Meyer’s talk. Among these were: the increase of medical and
pharmaceutical interventions to make individual bodies “fit” into existing social systems and the
dramatic decrease of any social “safety net” (public assistance for persons with disabilities).
The individual, and the individualization of responsibility, were recurrent themes throughout the
event—especially in relation to the influence of capitalism on the practice of medicine in the
United States. Many attendees questioned panelists on whether or not their proposed
interventions into these practices and/or institutions were realistic, given the tenacious hold of
capitalism and its current rigid practices. While there were some small-scale examples of
successful interventions given (communal living, alternative clinics that evaluate social fixes as
well as medical ones), this was the extent of the discussion, and—given more time—this would
be a fascinating avenue to continue exploring.
Another topic in which the concept of the individual loomed large was the genome. There were
several audience comments and questions regarding the power of the genome and the ease with
which risk scores that describe possible futures transition into labels that dictate identities. This
tied in with the parental fear that Professor Ormond had discussed earlier, and the question was
asked: Is fear a necessary part of medical care? Professor Ormond reiterated that this was one of
the limitations of genetic counseling, that there is no “gene for” (it is not as clear cut as that), and
that this is one of the reasons why she believes that discussions with genetic counselors might be
better framed in terms of “abnormal-normal, risk-chance.”
Most of the remainder of audience questions and comments can be divided into two categories:
those focused on the role of the history of eugenics and race in regard to processes of
pathologization, and those focused on the terminology used by the panelists. The history of
eugenics was mentioned by one panelist—Professor Ormond credited it as contributing to how
genetic counseling happens today. However, there were several excellent questions that brought
up the possibility that genetic counseling may be contributing to current eugenicist practices,
especially in relation to abortion of fetuses that are at increased risk for particular pathologized
conditions. While there was some further discussion of the relation of race, eugenics, and
pathologization, we were again limited by the format and time constraints of the event; however,
we all agree that this is an area of rich possibility for further events to explore.
Audience questions regarding the terminology used by the panelists were extensive, and also
limited by available time. Overall, these questions focused on the terms used to describe those
persons being pathologized, and why these specific words were chosen. Questions about the use
of the following terms were recorded: difference vs. deficiency, disorderly vs. disabled, disorder
vs. condition, atypical vs. abnormal, variance vs. diversity, and risk vs. chance vs. diagnosis. The
length and breadth of this list suggest yet another subject that could feasibly support its own
panel discussion; at the very least, it should be addressed in any future events planned as an
outgrowth of our event.
Our initial vision for this event was to begin a conversation regarding what work pathologization
does, and for whom. Overall, we agree that this panel was a good start to what we envisioned as
an ongoing dialogue, and we—along with our critical listeners, Jeff Sherman and Jen Trinh—
have many ideas as to aspects of our theme that future events might explore. These include
narratives and counter-narratives of pathologization, the role of institutions in pathologization
(and how this might be addressed), late capitalism and pathologization (especially regarding the
concept of “productive” bodies and the commercialization of pathology), disability activism, and
the history of pathologization—particularly in regards to race and eugenics. All of these topics
came up in one form or another during our event, and we all agree that the format of the event
severely limited our ability to allow the in-depth examination of any one of these rich lines of
questioning. However, these are topics that we think merit exploration and would make for
future events that would both continue the discussion that began during our event and interest a
wide variety of individuals and groups on campus and in the surrounding community.
As to the possible forms the continuation of this discussion might take, there are several that we
would like to forward. First (and most ambitious), we would like to suggest that, given the easy
division of our overall theme into the sub-topics mentioned above, a conference (or other multipanel
event) on this theme would be both one way to continue this discussion and have many of
the people who should be represented “at the table.” Regardless of the format of the event, we all
agree that future speakers must include disability rights activists, community members, and
narratives of pathologization that originate from the pathologized themselves. Suggestions for
future speakers included Mia Mingus and Leah Lakshmi Piepzna-Samarasinha; we also
acknowledge that more outreach and collaboration with the disability studies community on
campus should have been part of our process, and would highly benefit any future events that
stem from our event.
Other suggestions for keeping the discussion going dovetail nicely with the stated desire of the
Science and Justice Research Center for achieving more of an online presence. These include a
series of blogs (some of which would be guest authored), a series of podcasts and/or an interview
series, and a moderated online forum on the topic. The growing number of scholars working on
related themes on this campus, the presence of a healthy activist community (both on campus
and in the community), and the upcoming History of Consciousness concentration of
“Differences Now” all point to there being a good deal of interest in—and potential for joint
sponsorship of—a variety of events that could further the discussion that began during “Fixing
the Pathological Body” in new and innovative ways, and we look forward to seeing where this
discussion goes next.
In closing, Jessica, Linda and Sandra would like to thank our generous co-sponsors, without
which this event would not have been possible: the departments of History of Consciousness,
Literature, and Philosophy, the Institute for Humanities Research, and the Science and Justice
Research Center. We would also like to thank our critical listeners (Jeff Sherman and Jen Trinh)
for their time and extremely helpful feedback. To our panelists, Dr. Janette Dinishak, Professor
Kelly Ormond, and Dr. Matthew Wolf-Meyer, we wish to extend our sincere gratitude for your
participation and inspiring discussion, which we envision as the beginning of a much needed
exploration of the work, histories, and purposes of pathologization.
There were approximately 26 attendees, the majority of whom hailed from the social sciences.
The remainder of the attendees were from the sciences and the community.
Female Genital Mutilation is prevalent across many parts of Africa, with a wide variety of approaches advocated to help prevent this practice. Dr. Atif Fazari, Professor of Obstetrics and Gynecology at University of Medical Sciences & Technology, Khartoum- Sudan, will discuss his work as a reconstructive surgeon and opponent of FGM. He will talk about various strategies for reducing this practice, and discuss these with Dr. Carolyn Martin-Shaw, emerita Professor of Anthropology at UC Santa Cruz, who has published and taught about African women, social theory, and sexuality.
Hosted by Professor of Anthropology, Nancy Chen.
Organized by Associate Professor of Anthropology: Andrew Mathews
Respondent: Anthropology Professor Emeritus Carolyn Martin Shaw
Coordinated by: Dr. Jordann Loehr, MD, MPH
Engineering 2, 399 | 4:00-6:00pm | April 1, 2015
The Science and Justice Working Group Presents
A Conversation With: Troy Duster, Professor of Sociology & Director of Institute for the History of the Production of Knowledge, New York University and author of Backdoor to Eugenics (Routledge, 2003)
This month, the U.K. government proposed entering into DNA databases those youths deemed “at risk” for being criminals. How can and/or should “we” respond to such proposals? DNA databases have been celebrated for exonerating those unjustly charged with crimes, and for increasing the effectiveness of the criminal justice system, but at what cost? Are DNA databases creating new classes of persons (i.e., proto-criminals)? What are the justice issues raised by these forensic databases, and how do they relate to questions about prisons and justice? Such databases intersect with and alter issues of race, class and gender, issues that already strongly shape the criminal “justice system”; it is not yet clear what we need to know in order to address these topics in science, justice, and law.
Preceding this event, Prof. Duster will present a Sociology Dept. Colloquia: “DNA Fingerprinting and Civil Liberties: The CSI Effect and the Social and Political Implications of the Ever-Expanding DNA Databases" 3:00-4:30 p.m., Interdisciplinary Sciences Building 120
Sponsored by the Science and Justice Working Group and the Sociology Department
Troy Duster, “Criminal Justice/Genomic Justice?”
SJWG Rapporteur Report
23 April 2008
This event began with Reardon recapping Duster’s previous talk about the “CSI effect” and
DNA databanks. She mentioned that there was lots of attention on DNA data when she lived in
the UK last winter. The front page of the “Observer” recently had a headline, “ ‘Put Young
Children in DNA Database,’ Police Urge.” She asked, “How do we respond to this?” In the UK,
there is now biometric scanning/storing of biological information for migration and immigration
policies … In Troy’s earlier talk, he discussed the bias of the data base being 2/3 people of color,
so Jenny raises the question, “Can we put everyone in the database?”
Duster responded that it doesn’t change the operation of race. He noted that there would be a
false sense of universal justice. That is, having everybody is in the database assumes that since
we are all in, we are all equally subject to whatever it means to be in the database. Troy
discussed a case in the late 1980s that took place at University of Virginia. There were about a
dozen white fraternity boys, mostly from privileged backgrounds, who were raided by the police
for what turned out to be a cocaine raid. The community could not believe the police would
target college-attending white boys while real “criminals” are out on the street. Duster contends
that the apparatus of state will always turn primarily to vulnerable populations, which
consequently turn out to be predominantly black and Latino arrests. He stated that if there were
a universal database, such as in Portugal since 2004, there would continue to be arrests in
targeted areas. “Cold hits” are arrested on the streets and not on privileged college campuses.
The important thing to think about is what is the context and specifics of question. That is as
long as we have the apparatus of the state, it’s fool’s gold to have universal database.
Donna Haraway turned discussion toward the question of positive harm. She agreed that racial,
class distributions are fundamental issues, especially in regards to incarceration populations.
However, Donna questions whether the current database harms and whether the universal
database would do positive harm or will it be a money issue? Would it be a waste of distribution?
Haraway questions whether bias is structured in system and whether DNA bias is irrelevant to
system or is it doing harm? Duster responded that there are both exonerations and releasing of
innocent people—it’s always about individual cases.
Discussion turned towards privacy issues and whether it would be possible to protect 4th
Amendment rights through technical solutions. For instance, it may be possible to divide
individuals’ genetic sequences in order segment control of the sequences and allow for
exonerative use without disclosing the entirety of one’s sequence at any one time. Duster
responded that having technical solutions can be misleading and assumes an amount of expertise
and standardization that is typically not available on a large scale in law enforcement. Presently,
local, state, and national law enforcement agencies have widely divergent standards for taking,
storing, and using genetic data on suspects and convicts.
In response to this, discussion moved toward how to change policing practices. Duster responds
to this by suggesting that we change the reward structure within policing and challenge the
funding priorities that favor prisons over schooling. For instance, there are overtime policies in
police departments that encourage extra arrests and the end of shifts, incentivizing officers to
make excess arrests. Similarly, the state often chooses funding law enforcement and prisons over
universities because prisons create jobs for economically depressed communities and these jobs
cannot be outsourced.
Several participants raised questions about how much biometric and genetic infrastructure feeds
into police state and how much of it can actually be used positively to release innocent prisoners.
Duster responds that DNA at best is going to handle 1-2% of all crimes. Out prisons have 2
million people. Maybe 3000 exonerates for 300,000 who are not getting it. Beatriz da Costa
mentioned her experience of being an immigrant to the US and skepticism of being subject to
laser scanning and questioned something along the lines of where that information is going or
how might it be used against her. Duster responded that it seems to depend almost entirely on
who is in control of database. The answer is going to come in context of who is asking the
question and who has got the power.
SJWG member Jake Metcalf raised the question of whether we are giving DNA too much power
and notes there are all sorts of ways of reading the genome and more subtle ways of
understanding DNA. Some the concerns over genetic databases seems to rest on sketchy science
and an incomplete understanding of exactly what types of information get stored and how they
are used. As important as it is to resist the police state, it is important to avoid reifying an overly
powerful understating of DNA because then it is reinforced, when really it should be challenged
empirically and politically. Chelsea argued that the power of DNA in criminal justice will
largely be settled by legal precedent.
Mark Diekhans made the point that there is a privilege to identifying as/with the socio-economic
class that isn’t scared of being targeted as “criminal.” Duster mentioned that there is this pushing
together of “criminals” that started off as just sexual offenders, to then violent, then, felons, then
misdemeanor, to now arrestees – there’s a long continuum that we need to be aware of. Duster
highlights importance of possible, practical solutions. The ACLU says “arrestees, no; felons,
OK…” but at level of arrestees there is potential for mobilizing.
Rebecca [politics student?] then brought up the epistemological assumption of the body. That is,
without too much science how can the body tell the truth? From a political and ethical
standpoint, is the idea of the body property? What are underlying assumptions about the body?
Reardon added, who owns the self? Whose property is it? We’ve moved from ownership of land
to the self…is it white guilt? Who owns a body? Can anybody have property of the self?
Beatrice notes that classification is issue too. We don’t have to have a good science—looking at
donor profiles online; there are spaces for “homosexual tendencies” are being pathologized.
A question was raised whether there is fear of the “criminal gene”? Is there fear that we might
use new or find new categorization by developing a universal database. Duster responded that
crime is socially defined—even murder and rape. Historically, rape could not have happened to
black women by white men or slave owners. Haraway suggested that the politics of DNA storage
need to consider the politics of where samples are taken from? There is an issue of the quality of
science here and assurance regulating and limitations of a set of samples/data. We are not
looking at DNA but more a repeat of sequences. The politics of sampling raises the question of
“who is compared to what?” Donna reminds us that DNA is not one god but is a variety of
practices—the dog genome is useful to investigate—and thus we should not let DNA stand as a