Wednesday, April 19th
Hosted by the College Nine and Ten CoCurricular Programs Office, SJRC Assistant Director, Kate Weatherford Darling will present her research centering social justice and health inequalities in the discussion of biomedicine and US healthcare and policy. Asking the question: What would it take to build new California “healthscapes” (Clarke 2010) with visions of disability justice and health equity?
Unequal Healthscapes in California’s “Biohub”
California’s recent Tech Boom buoyed the Bay Area economy and transformed the political geography of the state and a global center of wealth. Venture capital / philanthropic investment along with public policies to promote “entrepreneurism” are rapidly changing the spaces, places of biomedical science and healthcare practice. In this talk, Kate offers an incomplete map of our unequal “healthscapes” (Clarke 2010), the cultural, economic and political terrains of health. Drawing on findings from her current and forthcoming research, she asks: What would it take to build new California healthscapes with visions of disability justice and health equity?
Katherine Weatherford Darling is Assistant Director at the Science and Justice Research Center and faculty in UCSC Sociology Department. Her research and teaching bridges Sociology of Health, Illness and Disability and Feminist Science Studies. Her current projects span diverse topics including: Post-Genomic epidemiology and HIV/AIDS science and health policy in the U.S. With UCSC and Bay Area collaborators, her new projects examine how the social and built environments of Bay Area’s tech and biotech economies are impacting the health of low-income Californians.
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.
James Battle is a University of California President’s Postdoctoral Fellow in the Department of Sociology at UC Santa Cruz. A graduate of the UC Berkeley/UC San Francisco Joint Medical Anthropology Program, Dr. Battle’s work focuses on the medical anthropology and sociology of The Black Atlantic, creolization, and the political economy of race. A member of the Race, Genomics and the Media Working Group at UCSC, his current research examines the discursive politics of race since the genomic revolution. In particular, this project explores the bioethical implications of changing institutional relationships and approaches to health disparities research. He is currently working on a book manuscript examining genomic “Africa” and its intersections with historical discourses of race, gender, and kinship in anthropology and sociology. His Science & Justice Research Center participation reflects his larger research concerns about the ways categories mobilize differential practices, resources, and forms of care.
Mentored by Jenny Reardon.
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.
At this panel discussion, we will discuss how cultural values shape what research questions are asked and how research is conducted. Science and engineering have long been portrayed as merely merit-based domains, or, as historians of science have called it, a ‘culture of no culture’. The demographic within these fields is commonly viewed as unrelated to the quality of knowledge produced, and therefore only a concern in so far as funding agencies mandate it to be. Drawing on specific examples we will examine how research questions change depending on who is asking them, teasing apart the complex relations between research agendas and the socio-cultural identities of scientists and engineers. Investigating these questions will contribute to a better understanding of the importance of diversity within STEM fields. Furthermore, a shared examination of the experiences of inclusion and exclusion will help develop a better grasp of how to pursue social equity within science and engineering fields. Finally, it will also produce insights about what kind of knowledge is produced and for whom.
Ruth Müller a postdoctoral research fellow at the Research Policy Group, Lund University, Sweden and lecturer in Gender Studies, Biology & Science-Technology-Society, at the University of Vienna, focuses her research on the relations between research policy, institutional frameworks and scientific work practices, currently in the fields of climate science and epigenetics. Müller is interested in critical reflection of contemporary academic work practices and social movements in this area, such as the slow science movement. Dr. Ruth Müller joins UC Santa Cruz for a second Visiting Scholarship with the Science & Justice Research Center.
Faye Crosby, Provost of Cowell College, Chair of Council of Provosts, and Distinguished Professor of Psychology at UCSC specializes in social justice. Her research interests looks at the relation between objective (i.e., consensual) and subjective reality; she has looked at individual attitudes in the context of social change and stability. Crosby's current work investigates the bases of people's reactions to affirmative action and has launched a new series of studies on how people can undertake non-revolutionary changes in rules that come to be revealed as unfair. She is also examining other ways, such as mentoring, of enhancing the peaceful evolution of work organizations.
Barbara Gee, has 35 years of experience in the computer industry, where she has held leadership positions in all functional areas. She has worked for HP, Silicon Graphics, TiVo, and other well known tech companies. In addition, Barb has served in leadership roles in the non-profit sector (including Huckleberry Youth Programs), and prior to joining the Anita Borg Institute was the Executive Officer of Human Resources for the Oakland Unified School District. She has also served on the San Mateo County Commission on the Status of Women, the Board of Global Exchange, and is an Advisory Board member of the STEM Academy at McClymonds High School in Oakland California. Barb currently serves as the Vice President of Programs for ABI, where she oversees the execution and development of programs focused on increasing the participation of women in technical roles, with the belief that when the inventors of technology mirror those who use it, society gains. Barb received her B.S. in Electrical Engineering and Computer Science from UC Berkeley, and her Masters in Management at the Sloan School of Management at M.I.T.
Joan Haran, a Research Fellow at Cesagene (Cardiff Centre for Ethical and Social Aspects of Genomics and Epigenetics) at the Cardiff School of Social Sciences whose research revolves around gender, representation and technoscience. She is particularly interested in the policing of boundaries between science fact and science fiction. Haran has a BA (Hons) in Literature and History from North Staffordshire Polytechnic, an MA (Dist) in Gender, Society and Culture from Birkbeck College, University of London and a PhD in Sociology from Warwick University. She co-authored the monograph Human Cloning in the Media: From science fiction to science practice (Routledge 2008) which drew together media, cultural, and feminist technoscience studies preoccupations and methodologies to document the symbolic and material labor of making genomics in the media.
Melissa Jurica, Associate Professor of MCD Biology at UCSC oversees the Jurica Lab, a research lab at UCSC working to understand the structural and functional analysis of spliceosomes a tiny molecular machine found in all human cells, as it plays a critical role in how our genes encode for an organism as unique and complex as a human being. She has recently become the director of the UCSC Initiative to Maximize Student Development program, which supports both undergraduate and graduate students in an effort to increase diversity in biomedical research.
Thanks to Women in Science and Engineering (WiSE) for facilitating the following recordings of the event:
Engineering 2, Room 599 | May 14, 2014
"Broadening Participation in Science and Engineering: Social and Intellectual Diversity"
SJWG Rapporteur Report
14 May 2014
Rapporteur Report by Lizzy Hare
At this Science & Justice Working Group Event, Lund University postdoctoral research
fellow Ruth Müller moderated a discussion about how diversity within the STEM fields might be
expanded. Panelists Fay Crosby (Provost of Cowell College, and Distinguished Professor of
Psychology at UCSC), Barbara Gee (Vice President of Programs at the Anita Borg Institute for
Women and Technology), Joan Haran (Research Fellow at the Cardiff Centre for Ethical and
Social Aspects of Genomics and Epigenetics at the Cardiff School of Social Sciences), and
Melissa Jurica (Associate Professor of MCD Biology at UCSC) shared their experiences and
specific examples of inclusion and exclusion within the STEM fields. Science & Justice
Research Center Director Jenny Reardon welcomed participants and the audience, adding that
the topic has been appearing more frequently in recent news media, and that she’s interested in
the rise of this concern during a time when there doesn’t seem to be a lot of progress being made
towards equity and inclusion.
Ruth introduced the discussion with a reminder that issues of inclusion have always been
a part of scientific knowledge production. In the early days of the experimental sciences,
scientists distinguished themselves by portraying themselves as the “modest witness” who could
transcend the body to make observations of the world that were not occluded or biased by the
researcher’s perspective. Crucial to the operation of these laboratories were those whose
contributions could not be counted as objective science, due to their non-white, non-male, nonbourgeois
bodies. When multiple others began to demand access, many of those who were most
successful embodied the “neutral” characteristics of white, male, bourgeois science as best they
could, effectively creating a science that could claim inclusion while still ignoring the
contributions of other ways of life. Müller asks us if it is perhaps time for science to accept that
it only allows in a select few, and that the traits that are seen as necessary for a good scientist
exclude a number of potentially excellent thinkers and scholars.
Faye Crosby began her contribution by explaining that she believes strongly in the value
of positivism, and that she believes this value is exclusive of gender. In her experience, there has
often been a pretense of using standards of merit, yet non-scientific values are able to creep in.
She used a social psychology study on affirmative action as an example. In that experiment,
white male subjects were asked to review applications for a single prize. They received
information about a person of color, or a white person. In half of the situations the persons of
color had low test scores but excellent letters of recommendation, while in the other group, it was
reversed. The reviewers showed a clear preference for white candidates, and justified it either
with the letters of recommendation or the test scores, depending on the case. Either way, they
claimed to be fair and unbiased in their decision making process. Faye used this example
because she wants to make the case that we should not change the way we do science to make it
more “feminine”, but rather, we should make it more scientific and make sure that the same rules
apply all over. This will require taking notice of all of the small structural factors that make it
easy to continue to enact practices that keep women down.
Barbara Gee discussed her work at the Anita Borg institute, and emphasized how the
institute uses scientific research to support the goal of the foundation. That research has helped
them to show that including women technicians and engineers in the research and design of a
product is both good social practice and good business practice, because it has been shown to
boost sales and yield more successful products. The Institute has had some success in fostering
relationships between women in computing and inspiring confidence, but they are still working
on how to change the culture within companies. Gee said that this is especially difficult because
so much of the problem lies in unconscious biases.
Melissa Jurica echoed many of the same sentiments that Crosby and Gee had shared with
the Working Group. Jurica explained that in her experience much of the problem lies in the
values that scientists are expected to share and to cultivate. These values might not promote
minority representation in science, and may even actively work to discourage it. She mentioned
aggression, self-promotion and skepticism in particular. For her, self-doubt is a form of
skepticism that she thinks might ultimately be beneficial to science, but it tends not to be valued
in laboratory settings. Because these values are seen as being neutral, it is hard for scientists to
recognize that privileging these values often means privileging certain kinds of people. Like
Faye, she encouraged the Working Group participants to utilize implicit bias tests as a way to
help people understand where their own prejudices may lie. In closing, Jurica also expressed
some frustration that women scientists are asked to participate in panels about diversity, but that
such talks often end up preaching to the converted, as it is too easy for those in majority
positions to ignore them. It is worth mentioning that in a full room, there were only two men who
were not directly affiliated with the Science & Justice Research Center.
Joan Haran brought the conversation outside of the context of the lab by discussing the
representation of women scientists in the media. Why, she asked, are women scientists in the
media so highly stereotyped? At the same time, she reminded us that realistic representations of
women scientists might not be desirable either. Fewer than 13% of professional scientists are
women, so if representations were accurate, their voices would be heard even less frequently.
But if representations of women scientists shift towards being aspirational, perhaps the better
move would actually be to disentangle the categories in the first place, and make space for
representations of scientists who happen to be women, or women who happen to be scientists.
One of the main concerns voiced during the discussion period was why there are fewer
women Computer Science undergraduates in the US now than there were in 1988, which was the
peak. Some seem to think that this could be because men present themselves as more confident
and self-assured, which leads women to believe that they are behind. Ruth asked if this might be
because we have myths about what science is as an activity, and that means that we tend to deemphasize
the importance of group effort in advancing scientific knowledge. Lauren asked the
panelists what could be done to make women more confident, and Faye responded by saying that
she does not want women to become as confident as men, but rather, she wants men to become
as humble as women. Melissa reminded us that all of these issues become more problematic
when there is a large gap in the gender divide in the workplace.
The matter of care and caretaking was also addressed in the discussion period. Melissa
attributes her ability to be successful as a scientist in part to her spouse who is willing to stay at
home. This caused others to wonder about the invisible labor of caretaking that has allowed
male scientists to be successful over the years.
In going forward, the Working Group is optimistic that the knowledge about gender gaps
and inequalities in science will be useful in making changes in the future, but there still seems to
be some concern around how to enact change in academic and private institutions.