I'm Dr Liberty Barnes. I'm a sociologist
and a member of the American
Sociological Association. This summer was supposed to be our
annual meetings in San Francisco
but due to the pandemic we are doing
the sessions for this conference online
at what is called the ASA Virtual
Engagement Event.
This particular panel is called
"Envisioning Real Utopias
in Medicine and Health care." We focus on
the work of Erik Olin Wright who argued
for "emancipatory social science,"
or research that evaluates institutions
and communities
according to moral principles of
equality, democracy, and sustainability;
develops viable alternatives for
institutions that fall short;
and advances theories of transformation
that foster
real utopias -- institutions and
communities that promote human
flourishing and alleviate human
suffering.
While Wright's work has been applied to
the study of markets,
income, the family, and community
organizations,
less attention has been paid to whether
and how Wright's vision applies to
medicine,
health care, and public health. This
session examines the achievement of
equality,
democracy, and sustainability in medicine. We recognize the shortcomings of the
medical system,
laud efforts to create real utopias,
identify potential utopic spaces, and
make recommendations for sustaining
medical utopias.
Thank you for coming to our session
today and I hope you enjoy it.
Let's just begin by introducing each one
of the panelists
and our discussant for today. So our
first panelist is Nancy Lopez. 
Nancy is professor of sociology at the
University of New Mexico.
She is the co-founder and director of
the Institute for the Study of "Race" and
Social Justice and the founding
coordinator of the New Mexico statewide
Race, Gender,
Class Data Policy Consortium. Professor
Lopez is the author of 'Hopeful Girls,
Troubled Boys: Race and Gender Disparity
in Urban Education'
and 'Mapping Race: Critical Approaches to
Health Disparities Research'
In 2018, she received the William Foote
Whyte
Distinguished Career Award from the ASA Section for Sociological Practice and
Public Sociology.
Kevin Moseby.  Kevin Moseby is
a faculty member of Drexel University's
Sociology Department
and faculty affiliate at Drexel Center
for Science, Technology,
and Society. Professor Moseby is
currently at work on his first book
manuscript: an analysis of the color of
HIV/AIDS
in the United States since 1981, which is
under advanced contract with New York
University Press. Congratulations!
Professor Moseby is a first generation
college graduate and has
never seen 'Indiana Jones and the Raiders
of the Lost Ark,' although he is a great
lover of film.
Alexandra Vinson is assistant professor of Learning Health Sciences
at the University of Michigan. She is the
author of several articles describing
how the American medical profession
changes over time
and how those changes are reflected in
medical training.
Professor Vinson is a co-founder and a
leader of the Sociology of Health
professions education collaborative. Her
new research focuses on the development
of innovative healthcare networks. 
And, finally, our discussant today is
Laura Mamo.
Laura Mamoo is professor of public
health at San Francisco State University where
she is also faculty researcher
at the Health Equity Institute and
Center for Research on Gender and
Sexuality.
Her research and teaching has focused
broadly on biomedicine and issues around
sexual and reproductive health, rights,
and justice.
Professor Mamo co-convenes the Science,
Technology, and Society Research Hub
at San Francisco State and is working on
a book on precision public health
and cancer prevention.
So, let's just begin by getting the
background -- the research background --
for each of our
panelists can you please explain your
field sites to us
um your research fields conceptually and
the actual field sites in their
locations
who are the various actors at your field
sites
what resources are there and who
controls them
and what are the rules and who enforces
them
i also want to add maybe you can tell us
what your preferred methods are what
kind of methods you use in your research
so let's go ahead and start with nancy
when i started familia good afternoon
family
i'm nancy lopez and i'm professor in
sociology at the university of new
mexico
and most of my work has been leveraging
the
conceptual use of critical race theory
and
intersectionality as inseparable so
what that means in practice is that
any work that i do primarily qualitative
but
lately doing quantitative race
work looking at things like the social
determinants of
health education in particular i
think about the importance of
keeping present that race and gender are
not individual level
social constructions but that they're
structural i also recognize
the importance of examining the social
movements that created things like head
start
that created things like upward bound
and that created
um opportunity uh structures
for those that would not normally have
access to higher ed
so um my field sites have been new york
city
which is where i did my preliminary work
but
as i said lately i've been um also
employing
quality a quantitative data collection
looking at latinos in particular
and this tendency to uh assume that all
latinos are racialized the same way that
is not true
there are many latinos who uh anyone on
this call could be latino and we all
have very different racial positions
right there are light-skinned very
white-looking latinos there are
afro-latinos like myself
and there's indigenous so um i'm also
trying to disrupt this narrative of
there's a homogeneous latino experience
it varies
according to your racial status and its
gender um
and yeah and the last thing i'll mention
is that i'm also working on a mixed
method um study that examines
the how ethnic studies curriculum
is um a lever for reducing inequalities
for uh students racial and ethnic
minority students primarily but
looking at in a way that looks at
intersectionality i did do a
quantitative study of
graduation rates in a public university
that will not
will remain nameless that examines
odds ratios for graduating using
social locations so comparing everyone
to high income white women
and seeing that class is not a proxy for
racial
and gender gaps so the same is true for
health outcomes we cannot assume class
is a proxy for that we need
we need a critical race intersectional
lens
thank you very much nancy that is that
was very fascinating and
um really it's a great addition to this
panel
uh kevin will you tell us about your
research please
sure thank you um so um i
am a sociologist of biomedicine public
health and race
and um and as for forsyth i
study uh black american health activism
centrally and that concerns comes from
um my interest in sort of intervening
into uh sociological work that uh as
i became um as i was studying as an
undergraduate and graduate student i was
always concerned
with what i saw as a reunification of
this notion that black americans um
were you know not doing anything about
uh particularly hiv aids and that they
were you know and i kept hearing as i
was reading that black americans
um were you know homophobic and
conservative and that just wasn't
matching what i was seeing
among black americans and i went to
undergrad and graduate school
first in the bay area in california and
i was
and i grew up in arkansas and i was like
well black americans are much more
complex and diverse
than what i'm seeing in the literature
and and and i was just like well this
doesn't describe what i
see and know and live and and and and
uh and um and i thought well
this is not true and
and uh the literature is old there's not
up to date it needs to be updated
and um and so that what's drew me to ask
the questions that i asked
and to say well we need to
uh actually hear from uh
the black americans and account
for their experiences their
understandings within the fields
of medicine and uh within the fields of
public health um and so the actors the
populates
the sites that i studied are the black
americans themselves
as they travel and transverse the
domains
of biomedicine that's
within uh you know the
the public health institutions but also
within
the means of medicine you know going
through doctor's offices
um um and things such as that
methods i do qualitative work
uh because i'm interested in
to uh the meanings and
uh the understandings and the
day-to-days
no struggles and lives and
dreams of the black americans as they
live day in and day out year after year
within
dealing with you know health
and public health in biomedical
institutions
uh you want to hear more
that was great um actually i wanted to
ask in in your book
is it based on interviews with a
specific community
my book is uh uh in cross
he says it's a lot is a different
methods uh
interviews with black american hiv aids
activists and advocates as well as
public health
many uh centers for the disease control
uh administrators and workers as well as
just observation at public health
conferences
okay got it thank you and alexandra why
don't you share
hi everyone it's really great to be here
with you today
i'm primarily an ethnographer and an
important through line in my work
is that i study medical power and how
it's reproduced
in new generations of trainees but also
how it can be
reproduced and contained within
healthcare organizations
and right now for my research i study
a set of innovative multi-stakeholder
networks that are called learning
networks
and learning networks are these
collaborative groups that are organized
around
shared problems of interest and these
shared problems of interest
are often but not always related to
specific health conditions
and the people who make up learning
networks are
patients families healthcare providers
researchers community and advocacy
organizations
and learning networks often have really
strong ties
to academic medical centers which pay a
fee to be involved in the network and
are a site where much of the
activity of the network namely caring
for patients takes place
learning networks are tend to be most
common in the united states but there
are
international learning networks
and learning networks are seen as a way
of achieving a learning health system
which the national academy of medicine
has been promoting for the past
decade or so a learning health system is
a system that continuously learns
where members use quality improvement
methodology to systematically gather
data about healthcare provision
and system level and health status and
quality of life of patients and they can
use this data
to implement both individual and system
level changes
to improve health outcomes learning
networks
um answer calls to systematically
improve healthcare
and they've been around for about a
decade and as you can see they have a
lot of elements that make them very
interesting
and one of the questions that motivates
my work is exactly how
innovative are they what sort of
potential do they contain
to fundamentally readjust some of the
major power imbalances that we see when
we look at the
provision of health care so for the past
couple of years i've been conducting
a field study of the development and the
operations of four of these networks
and it's funded by the patient-centered
outcomes research institute or p
corey pcori is a non-profit research
institute that was created as part of
the affordable care act
it funds a lot of research on
best practices and comparative
effectiveness research
the of course all the statements that i
make in the presentation
are solely the responsibility of me as
the author
and don't necessarily represent the
views of p corey
um its board of governors or the
methodology committee
and as i mentioned
the the sort of innovative potential
learning networks is is what is
really um pulling me to talk about them
in the context of
writes theories and one of the things
about them is they really do
make good on inviting a diverse set of
stakeholders to the table a much more
diverse set of stakeholders to the table
than we would normally expect in
discussions around healthcare
and learning networks give these
participants
robust agenda setting power for what the
network will do
and because they do this they do have
potential for shifting these entrenched
power relations in healthcare however
because learning networks are embedded
within institutions that do not
necessarily adjust their own social
relations
uh or hierarchies etc the emancipatory
of learning networks
might always fall short and in some ways
the project
may never be delivering on its full
potential
in addition learning networks rely on
the collection and the aggregation of
very large amounts of data
patient data in order to understand and
reduce unintended variation in care
and this means that participants in
learning networks face
really complex data governance tasks
both in
developing novel practices of data
sharing and the new norms that accompany
these practices and
they've got to figure out how to
integrate their
much more progressive stance towards
data sharing
into the conventional world of irbs and
data use agreements that are so
customary
in academic science so overall learning
networks
i find them to be a very exciting
example of what can happen
when a broader group of stakeholders
converges and renegotiates
how healthcare will take place
but as i mentioned innovation has hard
limits because of the way learning
networks are embedded in conventional
healthcare organizations
and conventional social institutions and
so studying learning networks
is giving me an opportunity to apply the
existing
sociological diagnoses and critiques of
medical care
to observe networks as they develop and
they vet alternatives
and to work with learning networks on
their projects of transformation
liberty you're on mute okay
thank you alexandra um i actually just
had one quick little question when you
talk about
the the unique set of stakeholders that
are represented on the learning networks
can you just like give us a list of who
might be in those
learning networks sure so learning
networks are are all the people who are
normally involved in healthcare so
patients and their families
the providers themselves and researchers
who are always kind of abstractly
involved in healthcare
but in a learning network they actually
come together into the same room or into
the same
zoom interface and they work together on
what the network will do and they
collaborate on
the that work and that work can vary it
can be things like
developing a data registry but also
developing all of the
items that um all the sort of questions
that
patients will have to answer at every
level of activity within a learning
network you're supposed to see the same
broad composition of stakeholders
participating
in an egalitarian way
okay thank you that was really
interesting um
i'm going to go through the questions
and we can each time we can start with
nancy but
nancy if you want to defer to someone
else to start on a round
of answers that's fine too um so this
first question is about equality
so wright laid out his three principles
of emancipatory social science
equality democracy and sustainability
and we're going to discuss each of those
concepts and how they
relate or don't relate to your
field sites so let's start with
equality right says in a socially just
society all people would have broadly
equal access to the social and material
conditions necessary for living a
flourishing life
so in your research what are the
challenges to achieving equality
and have you found spaces of equality
that is practices
practices policies their communities
that are working toward equality
and what might you see as practical
solutions that could help move medicine
toward equality and i would also add i
am guessing that all of you have seen
inequality so you can start by telling
us the
the main problems you see with
inequality and if you've seen
any kind of spaces that are leaving room
for
um moving toward equality nancy would
you like to start
sure i'll i'll kick us off so i think
the way that i think of it is
um in terms of equity and justice
and adopting a human rights framework
so when i hear conversations happening
among
primarily public health researchers but
also beyond
that are still having this hackneyed
debate
about is class more important than race
again i go back to the conceptual
underpinnings of how we understand
intersectional justice and
intersectional liberation
so um instead of asking what's more
important
if you adopt a critical race
intersectional perspective you would say
how does racialized capitalism
heteropatriarchy settler colonialism
interact to produce a constellation of
structural inequities
whether i'm in new mexico which is where
i've been for the last two decades
or whether i'm in new york city in
public housing
where across the street there's um you
know
people who live in co-ops that have a
completely different
social geography in terms of of the
social determinants of health even
though they're literally across the
street right their networks are
different
the occupational status is different how
they're racialized
and the intergenerational wealth
transfers are completely different
right because of structural violence so
i think what we need to do is shift the
conversation from equality
to again human rights and equity
equity that's anchored in intersectional
justice
and some of the policies that i know
have worked in different sites and
i would urge everyone to visit um duke
university center on social equity
william darady an economist has been
doing an enormous amount of work on the
racialized wealth gap
and you know i would add gendered gap so
there are policies like baby bonds
universal health care full employment
guaranteed basic
income that we know would actually
mitigate all of these um inequities that
we see manifested in
in health inequity so uh he is more of
an expert on where those policies have
been implemented it's a political
process right
who will be implementing but i've i've
heard that there are several
municipal governments that have adopted
policies like that
um i know seattle has tried um
instituting
uh policies that address racialized
wealth gaps and
and structural racism and intersectional
violence
but there are probably other um
innovations underway
i think new mexico is right for that
and i think that we as one of the states
that has
the hot one of the highest poverty rates
is a case study of settler colonialism
white supremacy and intersectional
violence
um and all the health inequities that go
along with that
so this is a place where we can
experiment with policies that we know
have worked
to to change that so yeah in a nutshell
i think we have to be um very critically
reflective
on our own social location systems of
violence
and oppression and and that might mean
recognizing that
um we may be benefiting right from
existing arrangements critical race
theory also makes the claim
that democracy and white supremacy
are mutually reinforcing so how is it
that liberal democracy
is actually part and parcel of the way
in which
we are um experiencing this
this level of racialized and engendered
inequity so i think it requires a lot of
um
deep reflecting and two books that i
would recommend
um to fuku suberis uh thicker than blood
how racial statistics lie
that's a powerful book and the coercive
volume that
um eduardo bonillas white logic white
methods
racism and methodology again i think
another fetish is to debate whether
qualitative or quantitative is better
they're both great and they're both
useful and i absolutely love mixed
methods even though i primarily identify
as a qualitative researcher
i think they're both valuable and and
those works
show the value for interrogating things
like equality
thank you that was excellent nancy i
mean there's
so much you said for me to think about
but but at one point you said this is a
political
process and it made me think health just
health is a political process
but um because we spend time
in medical settings we see how how
health is so often
constructed as a biological process
or you know and and you're right that
this is a political process
that can be addressed with
a lot of um political solutions
uh kevin are you ready to share with us
some thoughts
uh we're gonna have to unmute you kevin
sorry one of the centers of theoretical
centers of my research
is citizenship because i center my uh
research on
black american citizenship and the
contradictions of black american
citizenship
and uh and and and speak of my um
uh writing about black american hiv
activism
as a part of uh as
these black american activists and
advocates
know they come from a tradition of black
american civil rights activism and i
center it
along with sort of health activism of
the civil rights movements
um and uh sort of recall health
as a large part often ignored part of
the civil rights tradition
and um and
they often talk about this is a question
that they often
that they talk about is like what it is
that we need
for equity uh what do we need
to actually be healthy to
uh to uh what do we need so that we're
not the ones that are
the last to be diagnosed the ones to die
first the one to live the sacred life
um and they and it's quite amazing
because they have the
you know they speak of the social
determinants of of health
they know that it's not going to be the
medicine
or you know they're they're like you
know we need jobs
we need housing we need that's what we
need we don't need
you know the things that you know
people you know think we don't that's
not the medicine is not going to do that
that it's it's these things that i
understand
as you know rights of citizenship you
need
you know you do need the healthcare but
you also need a good paying job
and they understand that you know and
you need
housing you know and you need the things
that
for you know 400 500 years have been
denied
to black americans due to you know
racist democracy and racist capitalism
you know that has been denied to black
americans other
you know people of color yeah
and um that
you know as you said that's what i
largely see is
lots of inequality but
i think we find the
um you know the road
to equity
by focusing on those who have been
excluded
focusing on their dreams and aspirations
and i think um
you know again talking about why i do
the work i do
is because i i see that you know for
those
who have been
you know excluded from
you know you know within the context
of the united states which you know
practices
a politics of of of abandonment
you know that's what is going on here
and those that are most um
marginalized but yet they still
those marginalized are still fighting
for inclusion you know those are the
ones who
are aspiring and you know that's where
you find that dream that
that that that that way forward
you know and i think that that's you
know and that's what
sort of keeps me going and i think
that's where we can find you know
as a country that that that
that as obama says that a audacity to
no move forward um
and as nancy said you know we have the
knowledge and there are people out there
who are
you know who are paving the way with
the policies and the
know-how um and i think
one of the things that uh you know to
speak to this current moment of
racial injustice and moment i think some
of the things that
makes me somewhat hopeful in this moment
of horribleness
is that uh there is no growing
i think attention to um
sort of the
i hope there is growing attention to uh
sort of social logical or social
scientific
knowledge productions that that
demonstrate
you know the racial injustice and the
productive knowledge that we
help to produce as a discipline in
science
thank you that was an excellent point
there at the end
um i really shouldn't be commenting
in between all of these but you just
said a lot of things there that
i mean i i appreciate this focus on the
marginalization
that i one thing that's occurred to me
as i've been attending protests and
rallies
and listening to the speakers is that i
think
i think the white community and i speak
as a white person here
we think of these marginalized
communities around the edge and we think
okay well we'll just
we'll just extend we'll just extend
our range of concern so it includes the
marginalized
but we never think let's centralize the
marginalized let's take everyone who's
been on the margins and put them in the
center
and start from there let's just start
over and and rethink what that would
look like if we
if we focused on the needs of the
marginalized well that's the problem in
my work because i speak about how
you know as i said in the introduction
the color of hiv aids
and so i speak about how i speak of that
in my work in my book about how in from
1981 to the early 90s
you have a regime of black american
exclusion hiv
in in sort of the high prevention field
and that's when whiteness
is central and particularly centered on
white
america gay white men right that's when
all
of the you know imagery and the
prevention
uh uh domain is all centered
about large and white gay men so
excluded from that
is concern and imagery on like women
on black people generally yeah
um but then in the 90s you start getting
black people
black women and other folks start being
of concern to public health and you get
um but their concern
is within an institutional
infrastructure
that has been built up
by you know white americans and so
they're you know they're now
saying oh we see you black people you
you're dying
you're of concern but all the
institutional the systematic the system
that's built
up has been built up by white people and
so there's this destruction
yeah and and so it it's like that
inclusion doesn't solve anything
because it's it's not there it hasn't
include no so is this what you're still
in the margin
they move the people in but
that's why inclusion is not a panacea
right because
you're included in the system this
systematic racist institution
it doesn't change yeah yeah
alexandra are you ready to share
sure thank you i think if not
in this response and certainly some
parts of the later discussion
um i think what i'm what i'm saying
about learning networks is going to bump
right up against what kevin is saying
about
um inclusion not being a panacea i mean
it's it couldn't be
more true even when we have these
healthcare structures where we brought
in
the sense of who a stakeholder is it
doesn't guarantee
as i will tell you that and as i'm sure
you could have predicted
that it's going to result in
the composition of people who have
decision-making power
that in any way reflects the population
of the group
that body represents so um
from my point of view when i'm thinking
about medical practices scoped a little
bit more narrowly on
you know what might actually happen in a
hospital or in a doctor's office
um or in one of these learning networks
um you know the biggest
challenge to achieving equality in
medicine um
on on some level is that not all
stakeholders embrace the idea
of equality in medicine because of the
way it challenges existing hierarchies
and divisions of labor and privileged
positions of knowledge and expertise
so it seems to me that if i don't
completely
try to bust open the structure of a
learning network um one immediately
one immediate solution or at least a
pathway in that direction
is to put structural requirements in
place for a variety of stakeholders to
have decision making power
um obviously this is easier said than
done
but one of the one of the things that i
noticed as i was reviewing wright's work
um
which really resonated with my um
experience with the learning networks is
that um quote the actual limits of what
is achievable depend in part on the
beliefs
people hold about what sorts of
alternatives are viable
so a question that i have that i
continue to think about is
how can we create political will around
the idea that equality is important
um and i'm thinking in a much more
narrowly scoped way about
um learning networks and about the
people who populate them
and once the political will exists it of
course opens up a much more pragmatic
space where we
finally begin to deal with some of the
tricky issues of implementation
and things that come up that would
prevent and
that would prevent equality that i've
noticed as i've been doing my research
are things like who is a good patient or
a good
family partner and sort of morally laid
in
notions of who is um who can participate
who's qualified to participate in
decision making
um and agenda setting um tasks
how can we ensure that patient and
family partners have a real seat at the
table and aren't just reduced to
serious ceremonially recounting their
stories of illness
which is something that very quickly
happens and it is a way of marginalizing
patients and families who come to the
table they've quickly find out
in some cases often not in learning
networks but in other healthcare
settings that they're only there to tell
their story and to maybe motivate
everyone to care
um and that's i would argue that that's
inadequate although i think there is a
lot of value in honoring
the stories and the experiences of
patients and families that
led them to be more engaged in this type
of healthcare work
and one of the things that a learning
network has to do is to identify
a shared problem around which they can
organize their work
so do all the stakeholders care about
the same things
which stakeholders matter the most when
it comes to identifying problems of
interest
and now that we have a shared problem of
interest how can we align around a
shared agenda for addressing this
problem
i think um it's not self-evident
which way it will go in a learning
network when people come together
to try to identify a shared problem of
interest and indeed i've seen very
heated discussions
between different stakeholders about
what the network should actually be
working on
and the
networks often um defer actually
uh it's one of their practices to defer
to the patients and the families
to say that these are the things that
you're living with these are the things
that are most important to you
that we will adopt that as our problem
of interest
and um you will play an important role
in figuring out
how we're going to do that um and it
relies on
flipping the script a little bit on on
expertise and who knows best
and one of the things that i keep coming
back to is how
highly pattern and routinized medical
practice is and my earlier work on
medical training
has shown that some of this is an
adaptive response to things like
consumerism and corporatization and
medicine and how
working within these cultural
constraints
is actually trained in future physicians
in the way that they're actually taught
to
handle a patient encounter reflects
corporatization and reflects patient
consumerism
sometimes breaking the routine and
shaking things up is the hardest part
because it involves realigning these
social relations that have become
embedded
in routinized patterns of interaction
and are stabilized by
larger social and economic structures
and so
i keep coming back to the notion that in
order to achieve equality and build
an actually just society people have to
first be convinced that equality is
actually
um an important goal
and that would be obviously people
holding the power need to be
convinced of this um much more than
others
right excellent point i mean we're still
debating whether or not
systemic racism is real right this is
i mean it's hard to be moving forward
with solutions when more than half the
country is like i don't think that
racism is systemic
um lots of good points alexandra
thank you so much um i keep thinking how
interesting it would be
to to hear how nancy or kevin would
recommend
setting up one of these uh learning
networks um and maybe that'll come up in
our discussion
so nancy said something really
provocative she said
um she talked about the the sort of
intrinsic relationship between liberal
democracy
and white supremacy and
eric olin wright says that democracy is
important in emancipatory social science
he defines it this way in a fully
democratic society all people would have
broadly equal access to the necessary
means to participate
meaningfully in decisions about things
that affect their lives
so how might the concept of democracy be
applied to the to medicine and health
care
in your particular field sites and have
you seen examples of this
what would need to happen to achieve
democracy in the fields you study
nancy would you like to start again sure
and i want to back back to the question
that you posed which i actually was
thinking about for
a while because it reminded me of why i
started the new mexico race gender class
data policy consortium
it sounds very much like the networks
that you were describing the learning
networks it was about creating community
of practice around critical race
intersectional data collection
and analysis with the hope that it would
change policy not only in health but
also in education
and beyond so i think that is incredibly
important because if we can't
collect data on things like race is
different from origin
and ethnicity or lgbt status or class
origin then we're only going to go so
far
right so i think it's incredibly
important to create
that community of practice by starting
off with some core values
right we believe in equity we believe
in centering community wealth and not in
the knowledge that exists in the
community about
how to solve these problems so now um
to just address the question of how
democracy
might be seen by critical race theorists
and this wasn't my idea critical race
theorists
which are um primarily from the field of
law
that became disillusioned when many of
the reforms
that were attempting to um eradicate
structural racism
really haven't succeeded for instance i
went to new york city public high
schools
and graduated in the mid 80s and i went
to a high school in the middle of
manhattan in kind of midtown area 4 000
students
zero white students
that hasn't changed it's gotten worse
across the street or two blocks away
there was a school that was primarily
white and very
low you know poverty rate so some of the
things that we can think about
is how is it that even when we
embrace the idea of democracy native
american issues
and native american health concerns may
be
you know placed at the margins think
about a state like new mexico
where 60 of the state is um
a member of an underrepresented racial
or ethnic or tribal
community in this case 50 latino
about 10 native american but with very
small percentages
of black non-hispanic and what um
white it would be over a third but still
when issues around um
let's say mining or maybe it is issues
about
um who has access to higher ed
democracy doesn't work for native
americans
it doesn't work for even for hispanics
when we think about structural power
right and so this is why critical race
theorists critique
these ideal these liberal forms of
democracy that are not
centering historically oppressed
groups and their voices and the
solutions that they propose
for things like health equity health
justice
um completely abolishing
um systems of oppression like the prison
industrial complex right
so all of these things are are
problematic but i think
um patricia who comes just published a
book last year intersectionality is
critical social theory
and she talks about flexible solidarity
as one of the ways in which you can
remain rooted in your own experience i
am not native american i describe myself
as a black latina
from new york dominican who is married
to a brown skin chicano who has
historic roots here in new mexico and
the idea that you can create
a place where people can be rooted in
their identities but still understand
the experience and the injustice that
another group has experienced so
i think when we think about
possibilities where we can get to a
place of equality
and we use a critical race
intersectional lens
we can get to this place of flexible
solidarity where i can be in solidarity
and it was beautiful to see with all the
protests recently over the murder
of george floyd you would see signs like
indigenous
lives and solidarity with black lives
matter you saw
people at these protests that were
coming from almost every social location
white native um latino you name it
and so i think that there is a special
moment now to
advance this idea of flexible solidarity
and
whether we call it democracy or not is
not as important as what is happening
right
and what ways are these new social
movements and conversations
opening up ways of addressing um
intersectional justice and advancing
that that's how i
i would um assume that we can get there
and and there are policies like i
mentioned before
uh direct hamilton who is the director
of the kirwan institute has worked with
william darady um at duke and the
current institute is at ohio state
uh have done the policy work on baby
bonds right
and how if we implemented that policy we
could probably chip away at
intergenerational
racialized wealth gaps in the black
community the indigenous community and
beyond
uh so we definitely can use those
principles i think to advance
a more just society whether we call it
democracy or not
thank you nancy um i think i'm going to
rewatch this video like 10 times
so i can listen to every every point you
made
so many good points in there um kevin
can you
uh take it from here i agree with nancy
um and uh i just want to say that back
to the equality
equality questions like um and democracy
like i think um
you know for to get equality i think we
need like reparations like for black
americans for other groups
and that's something that hasn't
happened because the democratic system
that doesn't within the united states
hasn't
allowed it you can't even get you know
that bill
that's been on the books forever to get
studied through the democratic
process you know to its past um
and i think um you know
and you know people have uh and and i
think you know we
uh we in democracy and i think a little
all right you know i'm suspicious
of um of uh you know we have this
we we verify and um fetishize
names and labels of stuff like democracy
ooh it's so great
and and i'm always suspicious of such
moves um
and so like nancy i'm like it's not
important but it's paul because i think
when we call something
something it becomes dangerous and when
we run after it uh
um and but
i also think like even like tocqueville
he recognized how democracy
yes demarcus was dangerous and we could
have tyranny of the majority
you know and he was this little french
guy not to
know like wait long time ago and he saw
how it would be dangerous
i think we forget that that's how we got
the present
president dangerous you know uh
through democracy yeah in the
institutions
and i think we can see how democracy has
been a friend to a lot of people
to the world it's been dangerous uh even
as
it has had this um you know
discourse ethos of being a light towards
the world and been so great
yeah um
but i do think um
this notion of all people having equal
access
is a great notion uh
but i think it might be handicapped but
if we
attach it to this label of democracy
because i think you know some really
great sociologists have
have have um you know
taught us have shown how you know
liberal democracy
is anything but providing is doing
anything but providing equal access
to all groups mainly because as we've
spoken those who
mostly alexander those who have
the power don't want to give it up don't
let others
into the political chambers for instance
and um
and i think in particular talking about
the black community
uh and black politics i think uh
you know and i just happened to be
reading as i told my students never to
do this
like comments to an article you know on
the news
and and someone was trying to say that's
y'all i like it
don't do that
and um and someone was telling what
blacks
have had political power since the 70s
mayors of cities
and things like that and um
and then and then i think that's another
example of showing how like democracy
doesn't provide
you know equality equity it's like no
and again for some of the same reasons
that we've been talking about sort of
have because of systematic racism
and you know and the democracy in the
united states and so it's a question
of um of um
of how do we move beyond
i guess in sense that we've been sort of
handicapped given
the construction of this country
and since the beginning our american
democracy u.s american democracy
has been constructed through racism and
imperialism
colonialism
okay and so i might not be answering the
question
that you posed
you're muted
and i don't mean to interrupt you if
you're mid-thought
but i think that one of the things you
and nancy are making me think about is
uh for a long time there was this focus
on equality
and then people said wait we don't want
equality we want
equity and i'm wondering if there's an
analogy there that
equality is to equity as democracy is to
flexible solidarity or is there
something else that says
a democratic system we're going to be
dealing with the tyranny of the majority
but is there an alternative to democracy
that allows for restoration and
reparation
and um you know how like the electoral
college gives people in montana a bigger
vote
than people in new york like is there
something we could do that would allow
marginalized communities to have a
larger voice
in in the democratic process and i'm
just thinking out loud here
just based on the things that you've
been talking about
well there have been people like like
critical race theorists who have had
proposals
um like lenny grineer uh you know who
got in trouble
when clinton um
proposed that she become attorney
general but i was just a kid
and those when that happened
not that i don't know because i did grew
up
but uh but alexander do you want to add
something in
thanks kevin um i think i am gonna
broadly agree with
you and nancy about some of the um
some of the uh downsides or even
potential dangers and just
taking democracy as this
ideal without really thinking about what
it gets us and if it gets us what we
want
um and in thinking about
responding to liberty's question in the
context of the learning networks
um i first took the perspective of the
learning network and so i want to kind
of
show that but then i want to talk about
some ways in which it falls short
um in ways in which they're they are
aware
of this shortcoming um and
are working on it um and so
what i have seen is um
this is consonant with my earlier
comments but an example of democracy
that's being
really nobly but imperfectly implemented
at local levels and learning networks
and so when we're thinking about all of
the different
levels and strata of social structures
and culture
learning networks are very close to the
ground um
and in some ways it they are they do
form a good
arena for actually making change because
it feels very
concrete um and as i mentioned earlier
from the perspective of the learning
networks
there is substantial political will to
level medical hierarchies this is
embedded in their regular practices as
of now
and they do bring more stakeholders to
the table and they do give those
stakeholders real power
to set agendas and make decisions in the
context of
quality improvement and outcomes
assessment in healthcare
um however and as i say all these things
know that
this is no surprise to the people who
work in learning networks
um it's one thing to have
representatives from all stakeholder
groups at the table
and it's quite another thing to have the
representatives of those groups actually
reflect
the needs and the experiences of the
group they are representing
and so this results particularly on the
side of the patient and family
partners in a similar situation to what
we've seen in
other studies of patient involvement in
health social movements
that kevin referred to in particular
what we saw with
when white gay men became involved in
scientific review panels in the early
and middle years of hiv
what you what you end up seeing is
obviously the patients with the greatest
resources tend to be the most active
participants
in learning networks and in in this case
um many of the patient family partners
are white women
who are mothers of children who have the
health conditions that the group
is organized around and this
is not lost on them and there are
efforts underway to align the networks
to align network membership as a whole
and participation
with the broader demographic composition
of the patient population
that is affected by the primarily health
conditions that these networks are
organized around
and there is an emerging focus on health
disparities that
predates the much broader
turn toward health disparities in light
of covid
and in light of the ongoing black lives
matter movement
and so attending to barriers to
participation and to
inequitable patterns of recruitment of
patient and family partners are two
major issues that learning networks need
to address
in order to achieve democracy
under rights definition although
as nancy and kevin both mentioned not
getting hung up on what we actually call
it
is an important part of this as well
thank you alexandra um all
great points we're going to move to the
last of the three
qualities of emancipatory social science
three principles the last one is
sustainability
and riot defines sustainability as
future generations should have
access to the social and material
conditions to live flourishing lives
at least at the same level as the
present generation
so in your research field what aspects
of the system are sustainable
or are not sustainable and what would
the system require to achieve
sustainability
for me it would be universal healthcare
i mean without a question
but again if we're not addressing the
root causes and the root
social determinants universal health
care will only go so way as
so far and i think about right now with
covid19 and how the
caseload of um cases from indigenous
nations
is the highest i think you know in
anywhere in the country it's about 60
percent of our cases
are members of indigenous nations
and until those structural inequities
are erased even if we have universal
health care
if we're not having equal access to
basic infrastructure
just basic you know resources
that's not going to solve everything it
is a part of the solution
so that for me um is incredibly
important and i think we're in a moment
now where
so many people have laws lost their jobs
and many of them
you know their health insurance was
pegged to
um having a job that maybe it will
become
a sustainable and um
even a potential
policy that will be implemented i have
hope that that could happen
um i don't know what else we could do
other than change what happens in most
of our k-12
um institutions that are not
talking about things like structural
racism anti-blackness
settler colonialism heteropatriarchy
until we transform what passes as
knowledge
in most of our colleges and
universities that are training um people
who will be teaching in the public
school system
and that's that's a tall order right
because it's so decentralized
but i think that we can create models
that show
results and we can organize and struggle
to implement those models
and i keep mentioning the work that i do
in education around the implementation
of ethnic studies and again let's be
clear critical race
intersectional ethnic studies that are
practicing flexible solidarity are
thinking about um the violence that has
been visited on
whether it's native americans african
americans
latinos asian americans etc
and our white brothers and sisters who
also experience
um structural violence in the form of
capitalism that denies them access to
basic
um uh housing and things like that
so i think that this is a special moment
whether
it is a crisis but it could be a moment
of transformation
it could be a moment of solidarity it
could be a moment
where we see very different groups
practicing
flexible solidarity but a lot needs to
change
in terms of the ways that people
look at things like inequities
the ways that people look at the
humanity of others
the ways in which we can um hope
that many of these policies can actually
make a difference
so i think it could be sustainable
universal health care but more
importantly eliminating the fundamental
causes
of these uh very inhuman
and preventable suffering
that we are seeing all over this country
and all over the world i really do think
that it is possible
thank you nancy um kevin would you like
to
speak on sustainability it's hard for me
to think about because i kept thinking
about well we're in the anthropocene
and there's climate change and and and
and there's going to be like the world's
going to change
like struck like really structurally and
and then i can't help that's going to be
a lot of people of color
and poor people who most likely are
going to
die and
and that's hard for me to think about um
because they're already dying
you know and those who
who suffer most from climate change
are people who are you know poor and
folks of color and so globally
and so i think um
that um you know in
in they're not living
um you know they're not
so is this hard for me to think about
um your comments make me think about
sustainability has kind of two meanings
sometimes we think about it in terms of
the environment and sometimes we think
about it
in terms of systems but they both have
to be
sustainable i mean the environment has
to be sustainable in order for the
system to be sustainable and
i when i'm in the hospital like the
amount of plastic waste
is like it's amazing
like it is um about how this
seas and oceans are like but in 20 years
the amount of
plastic in the oceans are gonna like
quadruple or something
yeah and there is so much bio waste i
mean
so many needles and plastics that have
touched things that
you know it just makes you think is
healthcare even sustainable i don't even
know
but we'd like to have a system that can
continue to take care of people uh
alexandra
thanks liberty um so
again kevin you're you know you're
making me zoom out a little bit which i
think is really great
um and very helpful for thinking with
i my mind when i read
sustainability went directly to
financial sustainability
and what the risks are
of not having a financial
a sustainable financial model for
running
a health network or any sort of
healthcare organization
and also what the risks are that someone
might that a network might enter into
in order to attain financial
sustainability
um and you know this is a a massive
concern for learning networks and i
think that it without very very careful
planning it undermines the potential of
learning networks to actually make
good on some of their liberatory
potential
something that i take very seriously and
something that i've seen
the learning networks themselves take
very seriously the issue with them is
that they are
distributed across all these different
health networks they
are reliant on academic medical centers
to pay fees
to host a site of the network at their
center
and then the what's presented as
a wise way of running a network is
actually to have a diversified revenue
stream
which can lead
network leaders to look to places like
medical device manufacturers and
pharmaceutical companies
for different forms of financial support
and sponsorship
of course none of this comes for free
one of the most attractive things about
learning networks is that they become
very very large repositories of valuable
patient data
that includes not only clinical data but
also
patient reported outcomes
and the
this is obviously a commodity right as
soon as you take the patient data and
you begin to exchange it for
money in the interest of financial
sustainability you effectively
commoditize all of this patient data
which has important ethical concerns
quite obviously but
this puts learning networks almost
immediately in a compromised position
where they have to make difficult
choices about granting access to their
databases
or even becoming sponsors for certain
types of clinical trials
or becoming recruitment pathways for
pharmaceutical companies and medical
device makers to recruit patients
into their industry trials and so
recognition of this issue by
not just by me by the learning networks
themselves is spurring
um creative and interesting ways to
rethink data governance practices to
actually be more democratic
and i think the takeaway point for me
here is that
sustainability and democracy need to
grow together
or else they they will probably end up
undermining
one another and make this structure
kind of fall apart or very make it very
compromised and beholden
to um to people who
want to treat this data as a as a
commodity or
uh not just treating it as a commodity
but who might want to use the data
in ways that aren't confident with how
the network group would want the data to
be used
thank you alexandra all really good
points
as we're winding down i'm thinking we'll
just uh i want to collapse
the last uh few questions together
um so one of these questions is about
our present context like
um the pandemic has changed the everyday
lives of people around the world and the
black lives matter movement has gained
momentum in many cities across america
how might your research provide a lens
for understanding this particular
socio-historical moment
how have these new developments in 2020
shed light on your research
but then if you just want to continue
from there and tell each of
you tell us what are policy changes
you'd like to see
and then just generally some thoughts
about utopias like
what are what can we take away from eric
olin wright's work
um is it helpful to be thinking about
medical utopias um is it
too optimistic is it
allowing us maybe a space of creativity
where we can
reconsider what the system could look
like
so i'll i realize that's a lot to cover
but
i kind of think there might be some
overlapping in there anyway in your
thoughts uh nancy would you like to
lead off again sure so i mentioned this
earlier about the new mexico race
data race gender class data policy
consortium but really it's
about creating a data infrastructure
each of us work in organizations
whether it's in the university setting
or we partner with departments of health
or departments of education why can't we
collect data on class
right educational attainment class
origin what what is your parental
at age 16 think about what was the
highest level of education parent one
had
parent two etc this is
super important for shining a light on
inequities and creating
equity lifts and opportunities so
until we start collecting data
that can help us make the invisible
visible we won't be able to name the
problem
too often i hear reports about you know
well you know the incarceration rate or
the um the rate of people who are
infected with covid etc but that data is
often decontextualized and it's never
intersectional
they're not reporting by race gender and
class together let alone lgbtq status or
anything like that
so that's one minor thing that each of
us can do
could you create a consortium around
better data collection that allows for
making the invisible visible
as far as a medical utopia i mean we
have
um countries we have um even
municipalities
whatever that have implemented better
systems than what
we would say the average person has so
you know i remember going to
cuba it was must have been like i don't
know 20 some odd years ago
and i was really amazed with the fact
that number one
their um mortality rates for infants
was actually better than like in the
neighborhoods i grew up in
right where i'm presumably in a you know
a highly developed country how is that
even possible right their literacy rate
is better than um many places that you
can
think of with similar circumstances so i
know
um that there are other places that
would be considered more developed
countries that have
established medical utopia so what
lessons can we learn from them
right um is there a way that we could
create something different
um we know very well that it is possible
to reduce
the inequity why is it so complicated to
do it
i know i mentioned politics earlier but
right now we are in a political moment
we are in a political moment again
of transformation i believe so um
yeah i think that that's going to go um
quite far in terms of creating
what was envisioned with a utopia
um i love the idea of utopia
and that's only because i think we
expect horribleness
as a country in part because we we
think we we're schooled in dystopian
futures because
we realize that we see it so much in our
media
everything is dystopian and i think we
create the future
we expect and
we never see
we never see a visions of utopias it
just never happens maybe they're boring
or something
and we never see them and so we don't
expect them and so i think it's good for
us to think about them
and so in part i think all of us
sociologists should be thinking about
well what's a utopian version of this
and all scholars and everybody should be
thinking that because i think then
we will start to expect it um
and i think particularly that but again
i think we might get there if we start
centering the people who have been
excluded from the goodness of our
world um
and as nancy said
we need to stop thinking
well i'm going to reinterpret what you
said we need to stop thinking that the
united states
is like you know every time people say
that the united states is
the greatest country ever i would think
well it's actually really awful
because there's so much inequity
here and there's so much
you know the fact that you know you know
i have family members i think about
the family members who have died in the
rural places that i'm from because there
are no hospitals
or there's no good hospitals there's no
health care and think about how
that is really quite common across the
land of the united states because
of the healthcare deserts yeah
and i think how you know that how is
that
right just how is it even possible and
like such
the richest country in the world you
know
and i think you know
in a utopia you know that wouldn't be
and it need not be
and it could be different
you know i think we could create a
different but i think a part of it we
expect it and part of it is due to white
supremacy
and but it's it's hard it's deep because
white supremacy is
uh you know it's it's it's a u.s
american
that's peanut butter you know i mean
it's like there
uh and so it's hard to you know get it
out but you know i think it can be done
kevin um i'm wondering well first of all
i appreciate your
uh optimism i think it's wonderful and i
love this idea that we can't have a
future if we don't envision it
i mean we're only going to end up with
the future we
we create for ourselves and the one that
we dream of um
i also think to both of your points
kevin and nancy
that um you can go all around the world
and people don't think it's crazy or
radical to say we need universal health
care
we're living in a very strange
culture where to even suggest that it
you know just opens you up to all kinds
of debates
amazing when i went to amsterdam i spent
a lot of time understanding when the
first time i went there
people walk up to me and say i can't
believe how
people in your country treat your people
and i was just shocked because like no
i was like who like just old white like
old white people and i was like
what because like no one's ever said to
that to me in the united states no white
person
and i thought oh my god white people are
different like
like but that they had that
positionality that they could see
that and say that and i thought what's
wrong with white people in america
right and i thought well
like you know and so that example to me
of how like
central white supremacy is to the united
states
well and nancy makes a really great
point that it starts in our k-12
education right we're fed this
myth about the founding fathers and
and everyone around the world knows it's
a myth except americans
like we believe it is our truth and you
go to england and they know it's a joke
and you
you know um uh but there was something
else you said that i
oh i know i wanted to ask you how do you
think this particular moment
in the middle of a pandemic and um
with you know protests happening across
the country
how has it has that changed your lens
through which you see your data as
you're writing your book
well well
in a sense that um i don't know
it confirms what i've been writing about
it's funny because people are saying to
me oh wow your research is so current
and i'm like well i've been doing it for
like
15 20 years you know like and they're
like oh it's so timely and i'm like well
i've been doing it for a long time now
but people are now seeing it as
relevant because
it's it's about what folks are seeing
i think for the first time or seeing as
and when it comes to black people hiv
aids i feel like properly it becomes a
story
every ten years or like oh black people
are really dying from hiv aids or
they're really
you know it's really prevalent in the
community it becomes a new york times
story every 10 years like oh it's really
high prevalent rate
and um and
you know and like nancy i'm really
frustrated when they report the deaths
as just they're 160 000 dead and i'm
like well who's dead
like i'm gonna give you more contact so
i'm like that's
you know again the exclusion of people
because like it's not just
people who are dead the people have
certain demographic
detail i think that is missing that
render people
invisible you know
and i think in a medical utopia that
wouldn't be
we would know and then that's and we
will then
have you know detailed
interventions
um great and i do look forward to
reading your book
and it is very timely um
and then alexandra would you like to
share some final thoughts with us and
then we're going to turn some time over
to laura to
to discuss so much of what's been talked
about today
thanks um i'm wondering if i can make my
uh enthusiastic uh hopes and dreams for
medical utopia meet my policy
hopes and dreams um obviously the policy
that i think that we need if i could
just wave my magic wand is
um universal healthcare obviously that's
free at the point of demand to every
person who needs it
without any kind of restriction and this
aside from uh demonstrable benefits in
health and quality of life
would massively reduce cost in billing
and would solve
other problems like insurance
portability by making insurance
optional for those who want to add some
kind of extra luxury coverage
and for the great majority of people in
the us would make
insurance obsolete
from a very global level that's
that would be what i would absolutely
want to see
um when it comes to thinking locally and
thinking about how to create a medical
utopia
um yes i i definitely think that we
should
be not only thinking about medical
utopias but trying to make them
and there have always been alternative
models um these sort of small models
that
give us alternatives alternative ways to
live
and alternative ways to work and
alternative ways to be
and these models have coexisted with
dominant
forms of institutions in every society
and
often these these small models are
spaces that have been carved out through
will and through creativity
in the service of creating a more just
world and so
while you see problems often arise when
you try to scale these models up
there is value i think in trying to
replicate these small models
identifying problems with them
particularly as they pertain to class
and class
and racial exclusivity and trying to
solve these problems
um in in pragmatic ways and in just ways
and what i think i think
a roadblock to something like this um a
kind of pragmatic solution is that
people might be dismayed that this is an
incremental solution
um which i absolutely want to
acknowledge
but i also am encouraged by the fact
that um
it isn't it's already an act of
emancipatory imagination to think of
alternatives
to things like the biomedical industrial
complex
and it's important to acknowledge the
creativity and the dedication that it
takes to
iteratively develop and vet viable
alternatives
in the service of justice and liberatory
goals
okay
muted thank you um thanks alexandra
um i think for laura do you feel like
you're ready to
to maybe try to synthesize all of these
ideas that
we've shared um thank you
for for being willing to do this and to
provide some
kind of concluding remarks for us that
will help us
frame a lot of what's been said sure not
a problem
just wanted really to begin by thanking
you all for allowing me to be part
of the discussion uh to be a discussant
of a discussion
is a bit of a challenge i don't think i
can summarize
um but i really want your incredible
ideas
and research and trajectories to stand
in in the moment
i'll make a few comments and also how i
kind of came into this thinking with you
um as i was listening um i think that
the
there's obviously a large shared theme
of really thinking about the structural
workings of power
um and uh focusing on the
ways in which covid19 while some of us
mentioned it
you know has really it peeled back and
revealed the um social determinants of
health the fundamental causes
the structural workings of racism
in particular but other forms of
intersectional injustices
covet 19 though is has revealed this but
these things are not new
um i know everybody could not along with
some of this
but the fact that they're not new also
means that for 30
for neither are the critical
perspectives of rethinking new um that
we may be
uh providing something new
in the moment and i i know each of you
is doing that very thing
as long with many of our colleagues but
you've also pointed out
and i think really importantly that
critical race theory
intersectional theory um that
there has been movements for
re-shifting the language to think about
equity to think about justice
to think about human rights and that
this work too
has been going on a long time and that
this work
um i think is really important when i
looked at eric olin wright and i thought
about democracy
and equality and you know like like you
all i mean these are
these are failed ideals um
from a science and technology studies
perspective which is one of my fields
you know i think of them
like sheila jasinoff has helped me to
think about
these as socio-technical imaginaries
right these are
imaginaries and ideals but um but built
into these imaginaries are prescriptions
for who belongs who gets included
uh you know how power operates in
the production and the infrastructures
of imaginaries so
one of the things that i just listen to
you all
and and think is important is for us to
kind of be cognizant of relying on the
existing structures
as we move forward and and
create our own imaginaries and i do
think it's important and i love
i feel the tension i mean it's an
attention in all of us like how much to
rely
on the existing structures when you know
there's extant
literatures experience lived realities
uh you know uh the in the moment
and the in histories that the existing
structures um
exacerbate inequalities leverage it's
almost like we're leveraging
systems that themselves leverage
and exacerbate and reproduce uh
inequalities so there is a time to
re-build to re-envision
um and to
and i think that rebuilding and
re-envisioning is important because of
this point about the
infrastructures the very knowledges that
are
part of our systems and the ways they're
to use rouha benjamin's
uh phrasing yeah they're encoded
with inequality and so they need to
really be rebuilt from the beginning
uh to how we put the systems together
in the first place which kind of gets to
this
we question which i think you all have
also
been discussing uh which is about
the notion of participation inclusion
stakeholders
you know who um and i think that
even these emancipatory social sciences
like ourselves
but certainly the infrastructures of
power have really failed also
in the notion of participation um
and failed in different ways um one of
the
comments that i wanted to think about
while i agree with centering the margins
and you know thinking about ensuring
that knowledge production
centers those who've been excluded
marginalized mostly
um mostly black indigenous and other
people of color
but also i think there's a failure in
not recognizing
the social movements and other kinds of
expertise and
work that has also always been
been uh here so in other words to
recognize that
people black people indigenous people
are engaging with
knowledge science infrastructures all
the time
um and that you know there's a
it's one of the things i think about a
lot is a failure of social science to
think about participation
and to imagine that participation mrs
alexandra i mean i think
part of your project is does
participation
in infrastructural systems necessarily
create
um some sort of emancipation nancy i
think you're
with the data collection um
appeal and moment it's a similar kind of
question
and i think there's tensions here that
that
it's almost a both end right but the
utopia
asks us well to what extent are we going
to rely
on existing structures and to what
extent are we going to
begin anew and to rebuild
and i guess i'll just leave my comments
by saying that another thing i noticed
and maybe because of what i know about
you all
as well is um that there's
experimental reimagining that you all
do and i think some of our social
science colleagues
do maybe i don't know how many
but and that is to be creative and
experimental
and to be thinking about different ways
to create kind of habitable or equitable
projects
social science projects equitable
habitable
even systems that we're involved in i
mean we are all
part of this higher education
in some ways and i know very differently
positioned
which is part of the power and imbalance
and intersectional injustices
but i think i'm ex i'm hopeful by many
things
i don't know how i got there but i am
hopeful by many things and some of
some of it is the sort of social
movements that are happening
around us and have been happening for
black lives matter and
um also around um uh biomedical
infrastructure change but i'm also
hopeful
in the social science enterprise
in terms of really trying to to imagine
uh experimental
shared objects of thinking together and
being able to ourselves be participants
in uh shifting uh some of the
the structures that are in place um
from our various social positions
that we find ourselves in so i just
really want to
thank you uh for allowing me to kind of
talk and there's so much here
this is not just presenting on your your
research
but i really see you all as the kind of
vision
for allowing social science to be
uh emancipatory in both bringing
critical theories to the table that are
here
around equity justice and human rights
and also
being experimental in how to be
pragmatic
in changing some of the infrastructures
that we have
in terms of what what data what
collection who's at the table
and then also in imagining new
structures uh and not relying on the
ones we have in place what kinds of new
structures
do we need for the kind of world that's
habitable
joyful that that we want to kind of live
in going forward
where we're not like kevin i really
appreciated
uh the kind of sadness
of living in the world where we continue
to document
the the deaths and inequalities and the
ones that we know
are coming in terms of who lives and who
dies
sustainability is a a difficult word i
think
given how how where we are
um and how it's been used yeah but just
think thank you all
i don't know if that that doesn't create
more discussion because i feel like you
had a discussion
oh that was fantastic bravo laura thank
you so much for
um sort of tying all these loosens
together
um i want to thank each of you
personally i mean i think that each of
your work
contributes um you know makes a huge
contribution
to sociological understandings of
biomedicine and healthcare
but just on a very personal note i mean
there were so many comments that were
made today that
really have um inspired me and
forced me to think a little bit
differently about my own data and my own
work
and um i i do think you know
zoom is not the best uh maybe venue for
a conference but the nice thing is that
this is recorded and i can go back and
hear your ideas again and think about um
really what they mean for my own
research which is a little bit selfish
but i'm
very grateful for that so thank you all
very much and um
okay one part about the masturbatory
social science
yes please and sociology i feel like
that's a very hard thing
because i think back to uh my article in
so silence and healthy illness
i was shocked when it was because it was
it was accepted
with conditional things revisions
provisions and um the editors
wanted me to change the biggest thing
they wanted to change was my use of the
fray
white supremacist because i said that uh
the centering of white
gay men in the even when you know
folks were saying things like well you
know the first people who were
appeared in the surveillance data were
you know white
but the fourth and fifth were black but
we didn't it wasn't a big deal to us
and we knew black folks but we didn't
talk about it
and i was like well that's this that was
white that's the example of white
supremacy
the centering on whites and and the fact
that
you know they pay attention as other
folks have noted that you know it was
the white americans who would appear
in the doctor's office because they have
the resources and i like that's example
white supremacy and they're like that
you can't say that and and i was like
what do you mean i can't say it
and they're like and then people told me
well kevin you have to take it out
because
and i was like what are you i was so
confused like how can i
not say that kevin i think i can guess
what
race your reviewers were well you would
be surprised because
i've had a very similar response when i
present my research
and you would be surprised what the race
of the person who said that was
it's not who you think it's both at so
i'll give you
one other example and i couldn't agree
with you more kevin
there there is policing of what who has
academic freedom right
and it doesn't only happen in tenure
promotion
committees but it also happens in
reviews for journals
and it also happens when you apply for
grants so
i had one program officer at a very
prestigious
funding agency tell me that
intersectionality was
analytical laziness and this individual
proceeded to tell me that i should focus
on race or gender
or class and that um i should not appear
to care about one group
more than the other because there are
plenty of poor white people and this to
me
just signaled that this individual had
never read anything on intersectionality
um because of course we are looking for
intersectional justice
whoever is experiencing it but the point
is yes i've had responses from
even people of color but predominantly
whites who will not allow me to use the
word white supremacy either in a
publication or in
um a public presentation where we'll
silence it
and dismiss it as a structure right
and so i can could not agree with you
more
under what conditions is knowledge
production
on these injustices possible either in
funding
publication tenure promotion and i would
add hiring
we could each do audit studies of
letters that go out and mention white
supremacy or critical racial
intersectionality
and see what the outcome is so this is a
serious issue
it is it is a battle
i also i mean i hope that there's a way
that
kevin can write about this and that it
can be heard i mean
you know whether it's a piece for
chronicle of higher education
or maybe a more you know maybe a
research article
because i think that you are talking
about some very important issues around
knowledge production that probably a lot
of people don't realize and are blind to
within the
within the academy i also had a question
about how many of us went to a program
that required a course
on race or intersectionality and i can't
raise my hand
fy and i went to the city university of
new york it wasn't required
are you working for undergraduate or
graduate both and
volumes now what's the required
knowledge before you get a degree in
in all of our social science disciplines
very few
will require this kind of critical
analysis of structural racism white
supremacy or intersectional violence yes
i'm proud to be in california where
we're passing the ethnic studies
required and the answer yeah
well thank you during cultural studies
so i had
training in it before i went to
sociology that's why i found sociology
so odd when i first started
i only started as a grad student and i
was like what what are we reading
and then yeah we're reading things wrong
like what this marks what are we this is
not how you read marks but then
and then the fear is when it becomes um
institutionalized will be co-opted
right we have also seen instances where
let's say you know there is some kind of
requirement but then it becomes
and then i was like why aren't we
reading the boys and then we we went to
our department like let's because
liberty and i like china we all went to
ucsd
and they wouldn't let us read the boards
really
yeah okay
i gotta go okay thank you all very
much i hope you good to see you laura
thank you for this conversation thank
you liberty for getting us together
thank you
thank each of you okay
well have a great day and actually i
hope you find it time to enjoy more
virtual events
at the asa virtual engagement
event that's going on this weekend so
take care
and goodbye
