COMPLEMENTARY AND COMPETITIVE DIALOGS: DIABETES AND IDENTITY
IN NATIVE AMERICAN COMMUNITIES
A Thesis
Presented to the faculty of the Department of Anthropology
California State University, Sacramento
Submitted in partial satisfaction of
the requirements for the degree of
MASTER OF ARTS
in
Anthropology
by
Melodi Amber McAdams
FALL
2012
© 2012
Melodi Amber McAdams
ALL RIGHTS RESERVED
ii
COMPLEMENTARY AND COMPETITIVE DIALOGS: DIABETES AND IDENTITY
IN NATIVE AMERICAN COMMUNITIES
A Thesis
by
Melodi Amber McAdams
Approved by:
__________________________________, Committee Chair
Terri A. Castaneda, Ph.D.
__________________________________, First Reader
Roger J. Sullivan, Ph.D.
____________________________
Date
iii
Student: Melodi Amber McAdams
I certify that this student has met the requirements for format contained in the University
format manual, and that this project is suitable for shelving in the Library and credit is to
be awarded for the thesis.
_______________________, Graduate Coordinator
Michael G. Delacorte, Ph.D.
Department of Anthropology
iv
___________________
Date
Abstract
of
COMPLEMENTARY AND COMPETITIVE DIALOGS: DIABETES AND IDENTITY
IN NATIVE AMERICAN COMMUNITIES
by
Melodi Amber McAdams
This thesis research examines diabetes as one playing field on which Native
groups and individuals reposition and reassert identity by simultaneously exploiting the
language and premises of biomedicine to frame and to inform traditional Native concepts
of health while also critiquing and resisting biomedical institutions and discourses. This
multi-sited ethnography is conducted at the sites of biomedical studies of the genetic
etiology of diabetes, national community-based healthcare education and prevention
programs, and expert opinion or literature on Native California Cuisine and Culture.
Approved by:
__________________________________, Committee Chair
Terri A. Castaneda, Ph.D.
____________________________
Date
v
DEDICATION
This thesis is dedicated to the initiation of dialogs.
vi
ACKNOWLEDGEMENTS
I would like to acknowledge my committee chair, Dr. Terri Castaneda, for offering
support, encouragement, constructive criticism and new ways of thinking. Similarly, I
would like to acknowledge my first reader, Dr. Roger Sullivan, for taking the time and
effort to review this thesis, particularly the biomedical portions. I would like to thank
Rick Adams, Chairperson of the Hutu Anape Cultural Foundation for generously
consenting to be interviewed and donating of his time and expertise. I would like to
acknowledge my graduate student cohort, Kate, Holly, Kristina Casper-Denman and
others for the study groups and peer review of concepts and writing. I would like to thank
my spouse, Robert McAdams for moral support and proofreading. Thanks as well to my
long-time friend, Louise Lalonde, who was also roped into proofreading and to Cristi
Hunter, my friend and colleague, for her continued moral support and assistance with
references and logistics.
Thank you to the friends, family and coworkers who provided encouragement, support
and a sounding board for many of the ideas in this thesis.
vii
TABLE OF CONTENTS
Page
Dedication ......................................................................................................................... vi
Acknowledgements .......................................................................................................... vii
Chapter
1. INTRODUCTION ........................................................................................................ 1
Statement of Problem .............................................................................................. 1
A Cultural Narrative of Illness as Identity in Native Communities........................ 2
Relevant Theory and Definitions ............................................................................ 6
Identity: Native American, American Indian, Native or Indigenous ................. 7
Traditional or pan-Indian .................................................................................... 8
White Identity ................................................................................................... 10
Critical Medical Anthropology and Structural Violence .................................. 11
Biopolitics, Biomedicine and Syndemics ......................................................... 13
Sovereign Power and Sovereignty.................................................................... 21
Methodology and Course of Research .................................................................. 22
2. RESEARCH AND BIOMEDICINE IN NATIVE AMERICAN COMMUNITIES .. 29
Historic and Contemporary Discourses of Biological Identity and Disease
Susceptibility......................................................................................................... 30
Biological Identity and Disease ........................................................................ 33
Thrifty Gene Theory ..................................................................................... 34
viii
Biological Identity, Disease and Medical Research ......................................... 37
Contemporary Biomedical Discourses on Diabetes, Genetics and Identity ......... 39
“The Uniqueness of the Community” – Genetic Studies of the Etiology of
Diabetes in Tohono O’odham and Achimel O’odham (Pima) Communities .. 39
Ataxin-2 Binding Protein (A2BP1) Gene..................................................... 42
Apoptosis Signal Regulating Kinase 1 (ASK1) Gene .................................. 43
Single-minded Homolog 1 (SIM1) Gene ..................................................... 46
Reclaiming Genetic Identity – Havasupai v. the Arizona Board of Regents
(ABOR) ............................................................................................................ 48
Mechanisms of Structural Violence Embedded in Medical Research .................. 54
Theoretical Foundations for the Persistence of Structural Violence in
Contemporary Social Science Discourses on Diabetes and Thrifty Gene Theory 56
Conclusion ............................................................................................................ 58
3. THE EMERGENCE OF A SYNDEMIC BIOMEDICAL DIABETES
DISCOURSE .............................................................................................................. 59
The Incorporation of a Syndemic Approach in the IHS ....................................... 59
Cultural Relationships and the Syndemic Approach ............................................ 61
Youth Diabetes Curricula: Two Approaches ........................................................ 63
Youth Stay Healthy: A Type 2 Curriculum for Teens ..................................... 63
Diabetes Education in Tribal Schools (DETS) ................................................. 65
ix
DETS Pre-Kindergarten to Second Grade Curriculum: Health is Life in
Balance ........................................................................................................ 67
DETS Pre-K to 2nd Grade Stories................................................................ 69
DETS Prekindergarten to Kindergarten Unit ............................................... 73
DETS Grades 1 to 12 Curricula.................................................................... 77
Food Curricula ...................................................................................................... 78
Hospitals and Communities .................................................................................. 83
Conclusion ............................................................................................................ 84
4. NATIVE DISCOURSES AND DIABETES IN CALIFORNIA ................................ 86
Historic Discourses of Native Food in California................................................. 87
The Value of Native Food..................................................................................... 89
Framing Native Food with Scientific Discourse ................................................... 90
Gender, Kinship and Community ....................................................................... 103
Sovereignty ......................................................................................................... 105
Thrifty Genes ...................................................................................................... 107
Conclusion .......................................................................................................... 110
5. CONCLUSION: DIABETES AND DIALECTICISM ............................................ 112
Syndemics: Complementary Scientific and Traditional Discourses ................... 113
Divergent Syndemic and Native Discourses....................................................... 115
x
Avenues for Future Analysis .............................................................................. 116
Appendix A Interview Questions.................................................................................... 118
Appendix B Interview With Rick Adams, Hutu Anape Cultural Foundation
Chairperson ................................................................................................ 119
Appendix C List Of Acronyms ....................................................................................... 142
References ....................................................................................................................... 144
xi
1
Chapter 1
INTRODUCTION
In the past two to three decades, perceptions of health have been subject to flux as
American Indian communities within the United States have experienced what has been
described as a plague of diabetes1 (De Cora 2001; Kunitz 2008; Narayan 1996).
Responses to this phenomenon have arisen at the federal, state, community, corporate and
individual level (IHS 2011; Mihesuah 2005; Narayan 1996; National Institute of Diabetes
and Digestive and Kidney Diseases [NIDDK] 2009), resulting in a dialog about health
through which identity and power are also negotiated. This dialog combines ideas of
“traditional health” and “biomedical health” to deploy a rhetoric of renewal and
revitalization that aims to promote change in cultural perceptions of diet, identity, gender
and lifestyle. These narratives of renewal and revitalization push for both a return to an
idyllic, pre-contact past and a journey toward a utopian future informed by biomedicine.
STATEMENT OF PROBLEM
My thesis research examines diabetes as one playing field on which Native
groups and individuals reposition and reassert identity by simultaneously exploiting the
language and premises of biomedicine to frame and to inform traditional Native concepts
of health while also critiquing and resisting biomedical institutions and discourses. Four
1
In general, diabetes refers to Type 2 diabetes also known as non-insulin-dependent diabetes mellitus
(NIDDM). A list of 31 acronyms used in this work is provided, for ease of reference, as Appendix C.
2
tasks are critical to my analysis. In Chapter One I use theory developed in the arena of
critical medical anthropology to situate diabetes in a socio-historical context that makes
sense of the post-contact epidemiological disparities that have contributed to the creation
and maintenance of socio-economic inequalities. In Chapter Two I examine the scholarly
literature surrounding the thrifty gene theory to demonstrate how biological ideas of
identity inform the dialogs surrounding diabetes prevention. In Chapter Three I engage in
a discursive analysis of the current biomedical and community health services literature
to demonstrate how diabetes treatment and prevention programs affect and inform, and
are also affected and informed by, ideas of identity; health; diet; kinship; and gender. In
Chapter Four, I examine publications and review interviews with health care workers and
Native community leaders from Northern California in order to provide additional voices
and perspectives on health and Native identity.
A CULTURAL NARRATIVE OF ILLNESS AS IDENTITY IN NATIVE
COMMUNITIES
Health and mortality have long been a locus through which Native American
identity has been constructed—for example a popular perception of Native Americans as
a dying and vanishing people persists even today (Krech 1999; Nagel 1997). While
romantic, nineteenth century stereotypes that discounted westernized Native Americans
as assimilated and thereby inauthentic (Glass 2006; Krech 1999) were one of the major
contributors to the myth of Native Americans as a “vanishing race.” this myth was also
3
heavily informed by demographic and epidemiological studies (Cook 1937, 1941, 1943)
of west coast Native American population mortality. These now classic studies
chronicled the devastation and death of many Native California communities due to
communicable diseases. This perception of Native communities as literally “dying out”
began to change in the 1970s, when the Red Power Movement and a dramatic increase in
Native American census figures (Nagel 1997) disrupted the dying-peoples paradigm.
However, Native American mortality rates, which had been steadily decreasing in the
latter half of the 20th century (Nagel 1997), have now begun to rise again (Kunitz 2008;
Narayan 1996). This increase is directly attributed to diabetes (Kunitz 2008).
While Western discourse surrounding Native American health has changed,
healthcare remains a defining locus of the many ills that characterize Indian Country
today (Farmer 2003; Lockhart 2008; Scheper-Hughes 2006). As a result of the dramatic
increase in the incidence and prevalence of diabetes within Native American populations,
the Indian Health Service (IHS) and several other government agencies have allocated
resources and initiated programs specifically to address diabetes (IHS 2008; Narayan
1996). However, these resources are often devoted to the scientific study of diabetes.
These studies produce increased knowledge about the biological risk factors for diabetes
and clinical or pharmaceutical treatments of it, yet often (but not always) fail to address
the ultimate causes of disparities in epidemiology, such as socioeconomic inequality.
A central example of this phenomenon of medical research as structural violence
is the several decades-long longitudinal study of diabetes among the Tohono O’odham
4
and Achimel O’odham2 peoples that has enabled medical researchers to gain a greater
understanding of the biological risk factors for diabetes (De Mouy 2002a; Narayan 1996),
but has not ameliorated disparities in diabetes within that very community (Pavkov et al.
2007). This use of indigenous communities to gather medical knowledge without
providing appropriate compensation for such knowledge has been and continues to be a
mechanism of structural violence against indigenous communities (Borofsky 2005;
Napier 2002; Smith 1999). In the case of North American Native communities, this
structural violence is portrayed as aid, despite examples such as the Tohono O’odham
and Achimel O’odham Tribes, in which there has been no demonstrable improvement in
health for the O’odham people over decades of research (Pavkov et al. 2007). By
addressing diabetes as a purely biological pathology, existing socioeconomic inequalities
are maintained and medical data about diabetes that is useful outside of Native
communities is extracted with no real gains for study participants. The agenda of this
thesis can therefore be characterized as decolonizing (Mutua and Swadener 2004),
because it attempts to identify structural violence inherent in biomedicine and to clarify
and give voice to Native resistance to that violence.
The current diabetes epidemic is not solely a narrative of structural violence; there
has also been an increase in collaborative studies and community initiatives between the
IHS and other health organizations and Native American Tribes or individuals (Kunitz
2008). It is within this dialog that Native organizations and individuals have been able to
The Tohono O’odham and Achimel O’odham are often referred to as Pima. The Achimel O’odham are
the River people and the Tohono O’odham are the Desert people, this thesis refers to both groups
collectively as O’odham. This use of Pima has persisted in medical literature, as can be seen in the case
studies discussed in Chapter Two.
2
5
re-assert traditional Native or pan-Indian views of health that influence western medical
and biomedical communities. The growing dialog between the epistemologies of
biomedicine and traditional Native health epistemologies has revitalized a variety of
traditional health perspectives that highlight and possibly ameliorate social aspects of
diabetes epidemiology. In so doing, this dialog becomes a critical venue for Native
communities and individuals to renegotiate and assert cultural identity, thereby also
reducing the structural violence inherent in biomedical approaches to diabetes treatment
and research.
This thesis has both intrinsic and extrinsic research value in that it (1)
demonstrates that a dialog is occurring between traditional concepts of Native health and
biomedical health discourses; (2) identifies the appropriation of biomedical health
discourses by Native communities in order to decolonize concepts of health and (3)
explores the relationship of these discourses to contemporary conceptions and
expressions of Native identity and health as embodiments of structural violence. The
intrinsic value resides in my discursive analysis of how perceptions and representations
of Native American identity and health reflect a larger movement to re-traditionalize
Native American well-being and dietary patterns. The extrinsic research value resides in
the illumination of mechanisms for identifying long-standing cultural disparities and for
decolonizing state and federal approaches to healthcare. My analysis is relevant to
indigenous peoples in other settler societies, who may also be experiencing disparities in
the epidemiology of chronic diseases as a consequence of structural violence.
6
RELEVANT THEORY AND DEFINITIONS
Several areas of theory are relevant to the negotiation of identity and power
through the signifier of health. These include theories of identity, critical medical
anthropology (CMA), resistance and biopolitics. Theories of identity demonstrate how
identity is asserted and negotiated, particularly indigenous identity, as a method of both
colonization and resistance. CMA and biopolitical theory are useful for exploring the
mechanisms by which such identity is constructed, particularly the biological and
biomedical mechanisms that are the focus of my thesis. The use of decolonizing theory,
primarily discursive analysis to construct a narrative of survivance (Atalay 2006), is
central for identifying how this new locus of identity navigation is also the site for a reemergence of Native sovereignty and strategic resistance to structural violence.
Mechanisms of structural violence are frequently re-appropriated in de-colonizing ways
such as the use of the judicial system discussed in Chapter Two, the appropriation of
healthcare institutions and structures by Tribal Governments discussed in Chapters Three
and Four and the strategic use of scientific discourses discussed in Chapter Four. To
avoid confusion, I explicitly define the terms that are central to these theoretical
discussions such as traditional, Native, pan-Indian, white, CMA, biopolitics, bare life,
biomedicine and syndemics.
7
Identity: Native American, American Indian, Native or Indigenous
The methodologies and language used to discuss American Indian and Native
identity demonstrate the way that identity is constructed as a mechanism of colonization.
As many scholars have pointed out, the use of a single word such as “Native American”
or “American Indian” to describe all indigenous peoples within the United States is
inherently colonizing and essentializing. To avoid this bias, whenever possible, it is
preferable to refer to the specific Tribal or cultural affiliation being discussed (Harmon
2002; Niezen 2003; Smith 1999; Yellow Bird 1999). However, because this thesis deals
specifically with how a single American Indian identity is constructed via biomedical and
syndemic health discourses, the use of such descriptors is appropriate to the
characterization of these colonizing discourses. Within this thesis, “Native American”
and “American Indian” are used interchangeably in the discussion of how biomedical and
syndemic discourses construct an essentialized American Indian identity. In these
discussions the racism and violence that is embedded in these terms is appropriate to the
analysis of colonizing discourses.
However, when exploring resistance to colonizing discourses, the use of “Native
American” or “American Indian” to describe identity is problematic. In Chapter Two,
resistance to institutionalized academic methodologies that assert identity via the
appropriation of blood and DNA is discussed using the example of a single Tribe and
individuals within that Tribe. In such an example, it is straightforward to use the name of
the Tribe and the individuals involved. However, resistance is also present in the form of
8
multiple Tribes, communities and individuals such as the Tribal Leaders Diabetes
Committee that drove the development of the Diabetes Education in Tribal Schools
(DETS) Curriculum and ensured the presence of decolonizing narratives within the
curriculum3(NIDDK N.d.) In this context, it is useful to be able to discuss indigenous
resistance without using language that is associated with the colonization of indigenous
peoples. This thesis uses “Native” and “indigenous” somewhat interchangeably to
describe organizations composed of multiple Tribes, communities and individuals as they
engage with colonizing discourses. The use of indigenous is problematic since it is more
frequently associated with South American or global communities rather than North
American communities (Warren and Jackson 2002; Yellowbird 1999). While the
colonizing mechanisms and resistance discourses that I explore in this thesis are relevant
to indigenous discourses world-wide, the examples are focused on North America and
California. Within California, “Native” is frequently used to describe organizations or
themes relevant to the Tribes, communities and individuals indigenous to California,4 so
it seems appropriate to use “Native” in place of “Native American” or “American Indian”
when referring to the individuals, communities or cultures indigenous to North America.
Traditional or pan-Indian
While the word “traditional” may seem to imply a static conception of Native
3
See Chapter Three for a discussion of these decolonizing narratives.
See Chapter Four for examples of this preference, specifically the language employed by Adams (2011)
or the names of publications such as News from Native California.
4
9
American health rooted in a pre-contact past, medical anthropologist Susan Johnston
clarifies that late 20th century evocations of “traditional health” have both synchronic and
diachronic points of reference and application:
Traditional generally is used in this literature to refer to the indigenous
healing beliefs and practices of a particular Native American society in
contradistinction to the biomedical or “Western” medical system. The
implication is that these traditional beliefs are rooted in a deep history
predating contact with Europeans and that these were the beliefs and
practices that were in place as federally delivered health care gradually
took shape on Indian reservations. However, the word as used to describe
contemporary native societies’ practices accommodates changes that may
have occurred in those practices since the reservation period began, as
long as the practices continue to be shaped by long-standing cultural
worldview and values. [Johnston 2002:197]
In this thesis, “traditional” is used in the sense defined by Johnston to refer to a particular
community, while “pan-Indian” is used to refer to a similar set of beliefs and practices
that is characterized as belonging to a diverse group of Native communities. As discussed
earlier, such essentializing language is generally colonizing, however it can also be decolonizing when appropriated by Native organizations as a site or mechanism of
resistance. This distinction between pan-Indian and traditional is relevant since often pan-
10
Indian categories of “traditional” are developed based on the Native traditions of a
particular region or tribe or wider ethnological observations of Native North Americans.
In particular, Chapter Three discusses the educational programs developed by the IHS,
the Centers for Disease Control and Prevention (CDC), the National Institutes of Health
(NIH), Tribal health consortiums and others to create pan-Indian literature about
traditional foods and activities.
White Identity
A corollary to discussions of pan-Indian, Native American or American Indian
identity is how such constructs implicitly and explicitly reinforce white identity. In this
context white identity refers to the concept of whiteness as a legal, cultural and
institutionalized identity:
In ways so embedded that it is rarely apparent, the set of assumptions,
privileges, and benefits that accompany the status of being white have
become a valuable asset that whites sought to protect and that those who
passed sought to attain – by fraud if necessary. Whites have come to
expect and rely on these benefits, and over time these expectations have
been affirmed, legitimated and protected by law. Even though the law is
neither uniform nor explicit in all instances, in protecting settled
expectations based on white privilege, American law has recognized a
11
property interest in whiteness, that although unacknowledged, now forms
the background against which legal disputes are framed, argued and
adjudicated. [Harris 1993:1713-1714]
Harris further characterizes this concept of whiteness as created through economic
hegemony over non-white communities, including Native peoples. This idea of whiteness
as created and recreated in contrast to, and by economically exploiting, Native
communities has been further developed by many other authors (Lipsitz 1998; McMillen
2008; Reardon and Tallbear 2012) and is also developed in the exploration of the
biomedical and syndemic identity discourses discussed in this thesis. I deliberately do not
capitalize “whiteness” in order to emphasize that my thesis is not privileging white
discourses.
Critical Medical Anthropology and Structural Violence
CMA, as a sub-discipline of medical anthropology, has emerged relatively
recently. It was defined in 1995 by Merrill Singer as,
a theoretical and practical effort to understand and respond to issues and
problems of health, illness, and treatment in terms of the interaction
between the macrolevel of political economy, the national level of
political and class structure, the institutional level of the health care
12
system, the community level of popular and folk beliefs and actions, the
microlevel of illness experience, behavior, and meaning, human
physiology, and environmental factors. [Singer 1995:81]
Critical medical anthropology offers a framework for a multi-level analysis of health that
incorporates socioeconomic as well as biological aspects of health. The interactions of
scientific researchers, political institutions, health care agencies, and Native communities
and individuals are a central focus of my analysis.
CMA deals directly with western medicine as a form of structural violence: a
social structure that propagates and maintains the values of a dominant nation state (Jones
2004; Farmer 2003). Hans Baer, Merrill Singer, Ida Susser (Baer et al. 2003; Singer and
Baer 1995) and Paul Farmer (2003) have established the core theory of critical medical
anthropology that will be used to examine western concepts of health. Susan Sontag
(1978) wrote about the use of illness as a metaphor to express failings in the character of
the individual or people experiencing disease. Medical anthropologist Susan Johnston
(2002) has explored health as a signifier for Native American identity. I extend and
amplify her arguments in my analysis. Anthropological theory in general has
incorporated the illumination of these structural mechanisms of violence as a
decolonizing methodology (Farmer 2003; Jones 2004; Lockhart 2008; Scheper-Hughes
2006; Singer and Baer 1995) and my thesis contributes to this body of work. Lockhart
has summarized this approach and its development as:
13
The fundamental feature of ethnographic approaches to violence involves
a more comprehensive definition of the concept that moves beyond direct
acts of physical force and the “ethnographically visible” (Farmer 2004) to
include those processes that contribute to social oppression and assaults on
human rights and dignity (Bourgois 1998, 2003a, 2003b; Farmer 2003;
Green 1999; Scheper-Hughes 1992; Walter et al. 2004). In these accounts,
violence is generally defined as normative, systematic (or indirect), and at
least partly hegemonic in nature. Relatedly, and as Paul Farmer (2004)
points out, violence is deeply rooted in history and memory or, to be more
precise, the erasure of history. Nancy Scheper-Hughes and Philippe
Bourgois (2004b) have proposed conceptualizing violence as operating on
a continuum from the physical to the symbolic and structurally embedded.
[Lockhart 2008:95]
My thesis adopts the CMA approach of referring to this type of violence as structural
violence (Farmer 2003; Lockhart 2008) and characterizes structural violence as a
mechanism of reinforcing hegemonic discourses of whiteness.
Biopolitics, Biomedicine and Syndemics
In discussing identity as a site for the expression and reproduction of sovereign
14
hegemony, theories of biopolitics and bare life are useful for discussing the biomedical
regulation of bodies. CMA theory identifies the mechanisms of this regulation, namely
institutional regulatory structures that reinforce hegemonic discourses of whiteness and
perpetuate social inequalities linked to epidemiological inequalities. While the
biomedical discussion of diabetes in Chapter Two conforms to a classical example of
biopolitics, the recent extension of biopolitics into schools and communities as a result of
a syndemic approach to diabetes prevention is another central point of my thesis.
Michel Foucault’s theory of biopower and biopolitics is useful for examining the
normalizing health policies of modern nation states (Foucault 1984). Similarly, Giorgio
Agamben’s (1995, 1998) ideas of sovereign power, homo sacer, and bare life will be
used in discussions of interactions between the state and the individual at a biological
level to demonstrate authority and power. Foucault characterizes biopolitics as:
The disciplines of the body and the regulations of the population
constituted the two poles around which the organization of power over life
was deployed. The setting up, in the course of the classical age, of this
great bipolar technology –anatomic and biological, individualizing and
specifying, directed toward the performances of the body, with attention to
the processes of life–characterized a power whose highest function was
perhaps no longer to kill, but to invest life through and through.… Hence
there was an explosion of numerous and diverse techniques for achieving
the subjugation of bodies and control of populations, marking the
15
beginning of an era of “bio-power.” [Foucault 1984:262]
Biopolitics complements CMA and identity theory by identifying how regulation
and essentialization of the life of the human body to a uniform standard is a mechanism
of targeting and subjugating specific populations. This thesis explores biopolitics as a
mechanism of structural violence that reinforces hegemonic discourses of whiteness by
applying biopolitics to the regulation of Native populations. In my thesis I demonstrate
how the federal government and Indian Health Services (IHS) construct Native American
health as a classical example of biopower in which the Native American body is defined
through scientific studies. The systematic medical recordation, regulation and treatment
of diabetes in Indian Country creates a uniform, pan-Indian experience of diabetes for the
purpose of protecting not only Native American life, but life in general through the
production of medical knowledge. The exemplary places of biopower are extended from
the hospital and the medical laboratory to the classroom and the community.
Agamben situates his theories of bare life as extending biopolitics by identifying
how biopolitics have been applied since the emergence of democracy and by developing
the concept of bare life. Agamben characterizes the relationship of the biological
individual (zoē) to the State (polis) in his definition of bare life:
The protagonist of this book is bare life, that is, the life of homo sacer
(sacred man), who may be killed and yet not sacrificed, and whose
16
essential function in modern politics we intend to assert. An obscure figure
of archaic Roman law, in which human life is included in the juridicial
order [ordinamento] solely in the form of its exclusion (that is, of its
capacity to be killed), has thus offered the key by which not only the
sacred texts of sovereignty but also the very codes of political power will
unveil their mysteries. At the same time, however, this ancient meaning of
the term sacer presents us with the enigma of a figure of the sacred that,
before or beyond the religious, constitutes the first paradigm of the
political realm of the West. The Foucauldian thesis will then have to be
corrected or, at least, completed, in the sense that what characterizes
modern politics is not so much the inclusion of zoē in the polis —which is,
in itself, absolutely ancient—nor simply the fact that life as such becomes
a principal object of the projections and calculations of State power.
Instead the decisive fact is that, together with the process by which
exception everywhere becomes the rule, the realm of bare life—which is
originally situated at the margins of the political order—gradually begins
to coincide with the political realm, and exclusion and inclusion, outside
and inside, bios and zoē, right and fact, enter into a zone of irreducible
indistinction. At once excluding bare life from and capturing it within the
political order, the state of exception actually constituted, in its very
separateness, the hidden foundation on which the entire political system
rested. When its borders begin to be blurred, the bare life that dwelt there
17
frees itself in the city and becomes both subject and object of the conflicts
of the political order, the one place for both the organization of State
power and emancipation from it. [Agamben 1995:8-9]
Agamben contextualizes biopower as an altering of the traditional separation
between political life (bios) and biological life (zoē) so that a new, collapsed form of bare
life emerges as a frontier or colonized space where sovereign power5 intrudes into
biological life (bios) by exercising political authority and at the same time frequently
denying, altering or collapsing those same political or legal rights and the very existence
of the individual (as in the example of homo sacer). While the concept of biopower or
biopolitics developed by Foucault focuses on the standardization and regulation of the
biological body by the state in order to regulate towards a biological standardization of
life, the concept of bare life frames the body as a discursive space where mechanisms of
biopower fundamentally transform the zoē of an individual into a uniform category of
bare life. Chapter Two demonstrates how biomedical research and healthcare, as applied
to Native American bodies, is an example of this process. Chapter Three documents the
further refinements of biopolitical mechanisms to reach into Native communities and
social structures, but illustrates how bare life is also a space of resistance.
It is the description of bare life as a frontier space of struggle between biopolitics
and individual resistance to biopolitics that is useful, particularly since it identifies a site
Agamben references Carl Schmitt’s concept of sovereignty, as an individual or institution with the power
to apply rules and to whom those rules do not apply (Agamben 1995).
5
18
of resistance to biopolitics. While Agamben primarily discusses interactions between the
individual and biopolitics in his characterization of bare life, this thesis identifies bare life
more generally as a frontier space where identity is asserted by biopolitics and resisted or
negotiated at many levels, including the individual, Tribe, and the community.
It is also important to distinguish between Western medicine and biomedicine
(also known as scientific medicine). In medical anthropology, a distinction is often made
between Western medicine and biomedicine that characterizes Western medicine as
based6 in Western cultural practices, while biomedicine is described as the relatively
recent development of healthcare based solely on non-culturally specific, neutral
scientific practices that aim to eliminate bias (Lieban 1977). However this neutral
definition of biomedicine can be problematized. Deborah R. Gordon’s definition of
biomedicine incorporates a deeper understanding of the concept of biomedicine:
While biomedicine has successfully created and hoarded a body of
technological knowledge to call its own, its knowledge and practices draw
upon a background of tacit understandings that extend far beyond medical
boundaries. The biological reductionism by which modern medicine is
frequently characterized is more theoretical than actual; in its effects,
biomedicine speaks beyond its explicit reductionist reference through the
implicit ways it teaches us to interpret ourselves, our world, and the
6
This bias includes particular cultural values such as youthfulness and happiness in mainstream American
society and the medical practices associated with these cultural values such as plastic suvery, overprescription of antidepressants (Kottok 2011:93).
19
relationships between humans, nature, self, and society. It draws upon and
projects cosmology (ways of ordering the world), ontology (assumptions
about reality and being), epistemology (assumptions about knowledge and
truth), understandings of personhood, society, morality, and religion (what
is sacred and profane). Although biomedicine both constitutes and is
constituted by society, this interdependency is nevertheless denied by
biomedical theory and ideology which claim neutrality and universality.
[Gordon 1988:19]
As Gordon’s definition illustrates, there is more of a distinction between
biomedicine and western medicine in practice than in perception. This non-neutral
definition of biomedicine is complementary to critical medical anthropology in that it
invokes a discursive space that recognizes social risk factors and structural violence, in
addition to biological risk factors. My thesis treats biomedicine as an aspect of Western
Medicine.
The CMA concept of syndemics developed by Merrill Singer in the mid-1990s is
central to the discussion in Chapter Three of community-based healthcare that focuses on
education and outreach in communities rather than medical treatment of the individual.
Merril Singer defines syndemics as:
Syndemics, which I developed as part of an ongoing effort to rethink the
public health and social scientific understanding of disease so that it
20
focuses attention on the multifaceted interactions that occur among the
health of a community, political and economic structures, and the
encompassing physical and social environment. This reconceptualization
developed specifically out of many years of work on the health challenges
associated with social disparity… [Singer 2009:xiii]
The idea of syndemics explains how the biomedical community has justified the
expansion of biopolitical structures and mechanisms more deeply into Native
communities so that the biopolitical regulation toward life has moved from the discrete
units of bodies into community structures such as schools. While the regulation of the
community by the State is an intrinsic quality of Western democracy (Agamben 1995),
the regulation of the community through the mechanism of biopower represents a new
mechanism of biopolitics and demonstrates the way that anthropology, as a discipline,
continues to be, if not complicit, at least linked, to the development of colonizing
mechanisms. While Singer’s concept of syndemics was introduced within a CMA
framework as a decolonizing mechanism, it is used in this thesis to identify the extension
of biopolitical discourses into cultural discourses, as explored in Chapter Three.
Historically the discipline of anthropology has been part of the toolkit of colonizing
discourses (Erickson and Murphy 1998). While this appropriation is frequently embedded
within institutional structures rather than intentionally practiced by anthropologists, it
would be naïve to assume that this historic relationship no longer applies; the
development of community based healthcare approaches that is elaborated in Chapter
21
Three occurs around much the same time that CMA and other Social Science discourses
identified the silence of biomedicine on social aspects of disease etiology as problematic
(McDermott 1998; Singer 2009). While the intent of these critical discourses may be to
address and decolonize biomedical discourses, the epistemology of biomedical discourses
and structures is such that the uncritical application of critical discourses has a colonizing
affect. Lorde’s (1984) famous assertion and essay The Master’s Tools Will Never
Dismantle the Master’s House, certainly seems to apply in this context. However, while
the application of syndemic theory by biomedical discourses may expose additional
facets of indigenous identity to hegemonic discourses of whiteness, it also opens up
biomedical discourses to strategies of resistance; the complexity and imbalance of this
dialectic struggle is embodied in Agamben’s discussion of bare life, although he does not
explicitly apply his concept to indigenous communities.
Sovereign Power and Sovereignty
In the biopolitics described by Foucault and Agamben, power is asserted by a
Sovereign authority, such as the state. Agamben (1995) defines sovereign status and
power as the ability to both create and apply laws or rules that the sovereign is the
exception to. In my thesis, discourses of whiteness and their associated mechanisms of
structural violence that create and recreate white identity occupy this sovereign role. The
discussions of Tribal or Native sovereignty that are a recurring element of Native
discourses of identity, as elaborated in Chapters Three and Four, also resonate with this
22
definition of sovereignty in that they further emphasize the fundamental connection
between sovereignty and the power to assert identity.
METHODOLOGY AND COURSE OF RESEARCH
A purposive sampling strategy was used to identify texts for analysis, and a snowball
sampling strategy was used to identify health professionals at Native health clinics within
California to interview. Because the purpose of this thesis is to examine the changing
dialog surrounding health with regard to diabetes as presented to Native communities, I
examine texts from the IHS, selected Native academics, and other government and
indigenous health organizations as sites of cultural production. This qualitative method of
textual analysis corresponds to the linguistic tradition of treating texts as objects of
literary analysis (Bernard and Ryan 2000).
Literature describing the thrifty gene theory7 is examined for elements of biological
identity and causality that remain a strong undercurrent in contemporary diabetes dialogs.
To illustrate the way that Native communities experience the effects of the thrifty gene
theory, several recent genetic studies were identified using the PUBMED and EBSCO
databases. Medical, anthropological and Native literature have all dealt extensively with
the thrifty gene theory. Much like the history of blood quanta and Native American
7
The thrifty gene theory was formulated by geneticist James Neel as a genetic explanation for high rates of
diabetes within indigenous populations (Neel 1962). While Neel’s idea is considered a hypothesis rather
than a theory by current scientific standards, thrifty gene “theory” has become a commonplace identifier for
Neel’s hypothesis.
23
identity (Meyer 1999; Nagel 1997; Sturm 2002), thrifty gene theory has emerged as a
biological marker of identity. Unlike identity navigation through the locus of health,
identity navigation through the locus of the genome retains an inherently racial and
essentializing quality that continues to shape the course of biomedical and indigenous
diabetes narratives.
IHS curricula have been selected for analysis because they are published to meet the
needs of IHS health care workers, patients at IHS facilities, and students at Tribal
schools. Therefore any IHS curriculum on diabetes is likely to have been disseminated to
a significant proportion of Native individuals and communities served by the IHS, Tribal
schools, and Indian Health Clinics and represents a pan-Indian approach to healthcare.
This one-size-fits-all approach to what in reality is an highly diverse set of Native
societies and cultural traditions, makes IHS authored and disseminated diabetes texts an
appropriate target for the reframing or renegotiation of a dialog about Native American
health. Ordinarily, these curricula would be described as a tertiary source, as are most
textbooks (Booth et al. 2008). However, for the purposes of this thesis, such texts serve
as primary source materials for evaluating Western biomedical and traditional Native or
pan-Indian indices of health. They offer a standardized view of health disseminated to all
Native individuals served by the IHS or other government funded health organizations
within the United States. As such, this curriculum provides an example of a statesponsored push towards standardization in the health and “disciplines” of a population as
embodied in Foucault’s theory of biopower. These curricula also serve as materialization
24
of a colonialist cultural structure that, at times, reinforces and contributes to disparities in
health as described by critical medical anthropology theory and Agamben’s theory of
bare life, namely the extension of sovereign power into the community through the
mechanism of biopower.
A census of flyers, pamphlets and other ephemera related to diabetes and diet was
collected at the 2008 California Native American Day event held on the grounds of
California State Capitol in Sacramento. These were used to identify other regional
sources for evaluation, including a Native Cookbook, the journal News from Native
California and material from the Sacramento Native American Health Center (SNAHC).8
This regional material reflects a diverse range of sources concerned with the
dissemination of information about diabetes or diet. Limitations to this set of texts
include their regional scope—material analyzed from this set will only be relevant to
California. However, a common critique of texts dealing with indigenous peoples is that
the diversity of cultures and the diversity of individuals within a culture are often
flattened to a single perspective (Niezen 2003; Smith 1999; Yellow Bird 1999). Even
though these reflect small region and sample size, this census is representative of a
multiplicity of Native individuals, groups and organizations as well as state and federal
government groups and organizations.9
8
SNAHC is the former Sacramento Urban Indian Health Care Project (SUIPHI). For a detailed description
of the history of SNAHC see From Ethnographic Methods to Needs Assessment Data: Informing the
Sacramento Urban Indian Health Project, Inc. by Patricia Johnston (2004).
9
These include SNAHC, the California Rural Indian Health Board, Hutu Anape Cultural Foundation Chair
Rick Adams, and individuals of Luiseno, Nisenan, Salinan/Esselen, Mewuk or other affiliations.
25
In conclusion, these texts have been selected to be descriptive of healthcare concepts
and delivery systems as they are being negotiated and institutionalized by a variety of
individuals and organizations. The IHS texts provide an example of a central pan-Indian
narrative, produced through the ongoing dialog between government agencies and Tribes.
In contrast, the regional sources represent the variety of interests involved in narrating
traditional Native health at the local level. These plural and multilayered narratives of
health help to illuminate the more singular, blanket narrative about Native American
health produced by the IHS.
The use of cultural texts, in addition to more classic modes of participant-observation,
reflects contemporary shifts in ethnographic methodology. A half-century ago, Kroeber
asserted that “by usage rather than definition ethnography deals with the cultures of
nonliterate peoples” (Kroeber 1957:191). This historical focus on the emergence and
defining of anthropological fieldwork as limited to societies grounded in oral tradition
effectively precluded analysis of written texts as sources of ethnographic data.
Contemporary anthropology, of course, long ago adapted its methods to the realities of a
globalized, once print-based, now digital, world where texts comprise critical sites of
cultural production, knowledge and practice. Likewise, the “location” of fieldwork can no
longer be imagined as a well-bounded community of kin or even cosmopolitan
“villagers.” George Marcus illustrates this reality in his discussion of the need for multisited fieldwork,
What I have in mind, however, by the “paraethnographic” corrects an
26
approach to the design of fieldwork that flows from a now conventional
and too literal understanding of multi-sitedness as simply following
objective processes out there by some strategy. Multi-sitedness designates
a kind of path of movement in fieldwork, but where does the path come
from? A wall chart? A diagram? A map? A blueprint? A course for
ethnography set by some influential macro-narrative of process of how
capitalism works? Of what global process is? In introducing the concept
of the paraethnographic I mean to point to a different practice that more
directly relates to how fieldwork evolves these days as an engagement
with found imaginaries, and a literal exploration of these imaginaries as a
framework for ethnography. [Rabinow et al. 2008:70]
While textual worlds are not the only imaginaries Marcus had in mind in his
discussion of the “paraethnographic,” this is nevertheless an accurate descriptive label for
this sort of textual analysis. Much of the health-centered dialog that is the focus of this
thesis is multi-sited. For example, a textbook on diabetes generated by the IHS and
transmitted to educators and IHS health professionals throughout the country is a type of
ethnographic site. Similarly, an ethnographic site may be constituted by an online
message board where discussions of traditional plant usage and harvesting are posted not
only for all members of a tribe, but also for the general public, such as the Native Plants
education website maintained by the Federated Indians of Graton Rancheria (2009).
27
Given the increasing ubiquity of a dialog conducted through texts, and the ways this
mediation changes the resulting dialog (as in the case of a website, which both opens a
dialog to the general public, and simultaneously masks the consumers of that dialog), it is
imperative to include discursive analysis as a primary mode for obtaining ethnographic
data.
To supplement my textual analyses, interviews were planned with biomedical health
specialists and/or traditional health specialists within northern California. These included
professionals working at the Sacramento Native American Health Center, the California
Rural Indian Health Board (CRIHB) or at other Native American health venues and
programs. Traditional health specialists include non-biomedical health professionals who
are knowledgeable about traditional health within Native American communities. It is
important to note that status as a biomedical health specialist does not preclude status as a
traditional health specialist; indeed those professionals at the Sacramento Native
American Health Center who administer the Behavioral Health Services program are an
example of such hybrid professionals.
Because interviews with health specialists were categorized as research involving
human subjects outside a classroom, they were approved by the Committee for the
Protection of Human Subjects (CPHS)10 at California State University, Sacramento. My
submission to the Committee consisted of (1) an Application Form, (2) an interview
All research projects sponsored by the campus must be submitted to CPHS. The University’s official
version of an Institutional Review Board (IRB). IRBs typically rank projects according to risk levels and
require researchers to inform their “subjects” what these risks involve.
10
28
consent form and (3) a sample questionnaire. The Committee approved the application
and classified it as no risk. The sample questionnaire has been included in this thesis in
Appendix A.
Once CPHS approval was obtained, interviews were solicited using a census of
dietitians associated with the Nutritional Council of California Indian Clinics and posted
on the CRIHB website. Letters were sent to prospective interviewees and follow-up
phone calls made to schedule interviews. However, in every instance, interview
candidates had either moved to other positions, declined to be interviewed or could not be
reached. An interview with a traditional health specialist, Rick Adams, Director of the
Hutu Anape Cultural Foundation was arranged via professional networking. Adams
discusses traditional Nisenan healthcare practices and epistemology.
A copy of the consent form, questionnaire and a research summary was provided
prior to the interview. With the consent of Mr. Adams, the interview was recorded and
transcribed. A copy of both the audio files and the transcription was provided to Mr.
Adams, per his request. A bound copy of the thesis will also be given to Mr. Adams. The
interview transcription does not include paralanguage11 due to the technical nature of the
interview. A full copy of the transcribed interview is included as Appendix B.12
11
The inclusion of paralanguage such as pauses, pitch, intonation, or conversational noises such as sighs,
“hmm,” “umm,” etc. could provide additional context to understand the interview or the relationship
between the interviewer and the interviewee. However, since Mr. Adams was consulted as an expert, the
exclusion of extensive paralanguage was a deliberate narrative choice in order to focus on the content of his
interview rather than the interview itself as site of ethnographic engagement.
12
Linda Smith (1999) discussed the importance of recognizing the voice and authority of indigenous
peoples as a way of decolonizing scholarship that engages with Native communities. As part of this
29
Chapter 2
RESEARCH AND BIOMEDICINE IN NATIVE AMERICAN COMMUNITIES
Biological narratives of disease susceptibility locate Native American bodies as
the ideal subjects of biomedical research, transforming Native American bodies into a
resource for generating scientific data about disease. The contemporary study of diabetes
etiology using Native American subjects has its roots in persistent discourses of racially
based disease susceptibility (De Cora 2001; Jones 2003, 2004; McDermott 1998;
McMillen 2008). These discourses led to the construction of a health care system with a
significant focus on the subject of Native American bodies. Thus the contemporary
conflation of biological identity and disease susceptibility both justifies these historical
discourses and continues to perpetuate them and the underlying racial assumptions. While
some scientists have begun to question a primarily biological etiology for diabetes
epidemiology in Native Communities (McDermott 1998), these questions have simply
opened the door for additional types of health research rather than a re-evaluation of
Native American bodies as the subject of health research.
Racial theories linking identity and disease susceptibility have historically
focused on Native American communities. Racial theories of identity, such as laws of
hypodescent or blood quantum, have frequently been used to determine whether
individuals are recognized as Native American by Federal Law (Garroutte 2003; Meyer
acknowledgement, my thesis recognizes that Mr. Adams’ interview falls under the copyright of Mr. Adams
rather than myself.
30
1999; Sturm 2002). Theories of racial susceptibility have been proposed to explain the
epidemiology of diseases within Native American communities. Contemporary thrifty
gene13 discourse ties into both of these historical narratives to produce Native American
identity as both genetically other and unhealthy. This conjunction of the genetically
predisposed other reinforces hegemonic discourses of whiteness. At the same time, these
same thrifty gene discourses can also be deployed as a space for ironic subversion of and
resistance to colonizing ideologies and policies by using “inherent” genetic susceptibility
as an argument for sovereignty and increased access to traditional land, food and
healthcare.
HISTORIC AND CONTEMPORARY DISCOURSES OF BIOLOGICAL IDENTITY
AND DISEASE SUSCEPTIBILITY
The idea of Native American identity as a fixed biological identity is illustrated
by 19th century use of blood quantum formulae (Churchill 1999; Garroutte 2003), and
more recently, genetics to identify Native American individuals. Currently, many
federally-recognized Tribes and the Federal Government use blood quanta to determine
Native American status, and thus access to healthcare and other benefits. Such rules may
stipulate anything from one-half to one-sixteenth Native American ancestry in order to be
officially registered as a member with that tribe (Nagel 1997). Some tribes such as the
Miccosukee in Florida require as much as 50%, while others such as a few Cherokee and
13
The thrifty gene theory will be explained in greater detail in the Biological Identity and Disease section
of this chapter. The theory (as it was initially presented in the early 1960s) proposes that individuals who
store fat at a higher rate than others are more likely to survive periods of famine.
31
Apache tribes require as little as 6.25%14 (P. Adams 2011). In this sense, biological
identity can be used by Tribes to limit access to federal and state programs that fulfill
treaty promised health and social services for Native Americans. The Indian Health
Service provides healthcare only to Native Americans who can demonstrate one-fourth
Native American ancestry or are enrolled in federally recognized Tribes. Biological
identity, through the symbol of blood quantum, is used to evaluate the Native American
identity of individuals and by extension access to resources, while at the very same time,
underscoring romantic ideas associated with American Indians as a dying race.
Historically, biological definitions of identity were applied exclusively to Native
American heritage. In contrast to the “one drop” laws used to designate AfricanAmerican membership and descent, federal policy has, since the late 19th century
adopted a consistently assimilationist policy toward Native American peoples, with a
focus on reducing the number of individuals considered to be Native American by
absorbing them into “white” populations. Since the 1934 Indian Reorganization Act,
blood quantum (as demonstrated via a Certificate Degree of Indian Blood or CDIB) has
become a common criterion for Native nations to delimit qualification for Tribal
membership (Churchill 1999; Deloria and Lytle 1983; Fixico 2000; Rushmore 1914;
Sturm 1998). This approach originated in BIA policy meant to privilege Native people
who were culturally assimilated by granting them increased civil rights or other
entitlements. It also created a legal and governmental structure designed to decrease, and
ultimately erase, Native American individuals and societies (Ben-zvi 2007; Churchill
14
Some Cherokee Nation Tribal Members have as little as 1/2048 blood quantum (Sturm 1998).
32
1999; Deloria 1969; Deloria and Lytle 1983). Thrifty gene theory continues this narrative
of a vanishing race by positioning Native Americans as genetically unsuited for
contemporary environments. In much the same way that early anthropology in the United
States conducted salvage ethnography among “primitive” societies to gather information
about their development on behalf of modern civilizations (Erickson and Murphy 1998);
one of the premises of the thrifty gene theory is that at least the genetic maladaptation of
these Native American populations can provide knowledge about diabetes that is useful
to contemporary settler-society communities.
The genetic construction of Native American identity emerged in the mid to late
20th century and has continued the narrative of Native peoples as a dying race, while
simultaneously introducing a more inclusive measure of identity (Neel 1962; Reardon
and Tallbear 2012). In the 1960s, the concept of a Native American genome emerged as
an etiological explanation for high rates of obesity and diabetes within Native American
populations (Neel 1962). Once the technology to easily duplicate and identify sequences
in DNA was developed, biological anthropologists also focused on Native American
DNA as a way to explain population movement in the Americas (Raff et al. 2011). In
contrast, health scientists began searching for genetic reasons that might account for
increased susceptibility to everything from diabetes to alcoholism. The ability to actually
identify a genetic etiology led to renewed interest in the genetic and para-genetic (i.e.,
proteins, cellular mechanisms, etc.) examination of Native American DNA.
33
Biological Identity and Disease
Historically, racial theories of disease susceptibility have been used to explain the
high rates of diseases in Native American communities. The thrifty gene theory is
consistent with a long history of biological ideas of disease susceptibility. Disease
susceptibility as an aspect of race has persisted since European explorers and settlers first
interacted with Native Americans. It is ironic that inherent susceptibility to the diseases
associated with contact is attributed to the individuals on the receiving end of these
pathogens. This victim-blaming approach is one of the more common mechanisms of
structural violence in healthcare (Baer et al. 2003; Jones 2004). Popular theories of
disease susceptibility have included racial vulnerability, virgin soil theory, and the idea
that disease vulnerability is directly related to the proportion of Indian blood that an
individual possesses. Virgin soil theory, the idea that indigenous people’s differential
rates of disease incidence and prevalence are the result of a lack of resistance, was a
persistent etiology from the 1970s to the 1990s, allowing the historical narrative to place
the burden of disease susceptibility on Native American physiology rather than
preventable social conditions such as poverty, malnutrition, violence or the conditions on
reservations (Jones 2003, 2004; McMillen 2008). Jared Diamond’s Pulitzer Prizewinning book Guns, Germs and Steel (1998) uses virgin soil theory as part of an
explanation for European conquest of the New World. While this and other biological
narratives of pathology provide an explanation of differential epidemiologies, they also
identify these disease-burdened communities as appropriate subjects for scientific
research about these diseases. This narrative is crucial to understanding how the study of
34
Native American bodies has persisted as a method for addressing differential
epidemiologies in Native American communities. Biological narratives of disease
susceptibility have institutionalized Native American health-care as the production of
medical knowledge through the study of Native American bodies rather than the
identification and mitigation of the social conditions fostering disease. Jones (2003)
describes this focus as an “immunological determinism” that justifies the continued
ignorance of social disparities through the use of a scientific narrative.
Thrifty Gene Theory
The thrifty gene theory15 is a contemporary expression of historic ideas of racial
disease susceptibility. It was proposed in 1962, by geneticist James Neel, as an
explanation for high rates of diabetes in Native American and other indigenous
communities. According to the theory, typical hunter-gatherer communities experienced
alternating periods of feast and famine. Thus genes that stored calories more efficiently
conferred a selective advantage for survival during periods of famine. However, during
prolonged periods of readily available food (particularly the government commodity
food, high in sugar and fat, that was provided to Native American reservation
Current scientific literature may refer to a “thrifty genotype hypothesis” rather than “thrifty gene theory”,
however the latter phrase has become ubiquitous and is used in this thesis. Thrifty gene theory in this
chapter is discussed in the context in which it led to the initial focus of diabetes research on Native peoples.
While Neel updated his theory to account for an increased understanding of the nature of diabetes (i.e., a
polygenic rather than monogenic explanation), he maintains his argument for a thrifty genotype (Neel
1999:S4), indeed Neel expands his argument to include essential hypertension and obesity as diseases
caused by genetic maladaptation. Other anthropologists (Allen and Cheer 1996) have proposed alternative
genetic mechanisms that allow some populations to adapt more effectively to nutritionally rich
environments.
15
35
communities), such genes would predispose individuals to obesity and diabetes (Neel
1962). Whereas Neel collected blood samples from Yanomami communities in South
America in an effort to identify this thrifty gene (Borofsky 2005), the IHS, National
Institutes of Health (NIH) and National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) focused on Native communities within the United States in order to
study diabetes (DeMouy 2002b; IHS N.d, 2008a, 2008b, 2008c; NIH 2011). Neel’s
thrifty gene theory effectively located Native American and other indigenous bodies as
the natural subject of diabetes research. This appropriation of indigenous genomes as
natural and appropriate subjects of biomedical research benefitting Western communities
is embedded in contemporary population genetics, which claims to undermine racism by
mapping the close biological relationships between indigenous communities and western
communities. Yet, at the same time that Native genomes are being extracted from
indigenous communities, they are also being deployed against them through the
generation of scientific knowledge that often undermines or contradicts the stories,
cosmologies, and epistemologies of the donor or “subject” (Reardon and Tallbear 2012).
The biomedical discourse produced by James Neel’s thrifty gene theory has
positioned Native American bodies as research subjects at the same time that it
reproduces Western knowledge systems and health disparities. The paradoxes evoked by
this phenomenon can be seen in Donald Fixico’s observation that,
For an Indian person of native tradition to place his or her trust in a nonIndian doctor is a great undertaking, implying less appreciation for one’s
36
cultural beliefs and practices. A part of this changing perspective is the
notion that Indians have obtained white diseases and need white medicine
to cure them. [Fixico 2000:122]
By restricting thrifty genes to indigenous bodies16, indigenous peoples were
situated as the natural subjects of biomedical research, and diabetes as a disease to which
indigenous peoples were inherently vulnerable. As scientific research generates
knowledge about the genetic mechanisms of diabetes susceptibility in Native American
communities, this discourse of Native Americans as genetically predisposed to diabetes
and obesity is further institutionalized, thereby rationalizing the need for additional
studies of diabetes in order to treat “vulnerable” Native American bodies. Creating and
recreating Native American bodies as subjects of research is an act of structural violence
that reifies and reinforces socioeconomic disparities. These disparities are further
widened by the knowledge such scientific research generates since it is effectively more
available to white communities, which have better access to health-care and do not
experience the same institutionalized social stresses faced by Native communities (Harris
1993; Lipsitz 1998). Thus whiteness, as a category of social and biological hegemony, is
also reproduced.
16
While there has been extensive discussion within the literature of medical and biological anthropology as
to whether thrifty genes are the ancestral condition and whether indigenous populations have a greater
disposition as a result of genetic differences (Allen and Cheer 1996; McDermott 1998; Neel 1999), further
research into this question continues the institutionalization of diabetes research focused on indigenous
communities at the same time that it continues the discussion of whether genetic differences are the cause
for differential diabetes epidemiology.
37
Biological Identity, Disease and Medical Research
Because of this long history of differential epidemiology and a perceived racial
etiology, Native American communities have been, and continue to be, frequent subjects
of medical research. Native American communities first became disproportionately
subjected to medical research in the 1930s, when tuberculosis epidemics swept through
Tribal reservations and Indian boarding schools. At the time, American Indians were
believed to be more susceptible than other communities to tuberculosis because of their
Native American heritage (McMillen 2008; Young 1994). In 1928, when the Meriam
Report was submitted to the Department of the Interior, it identified tuberculosis and
trachoma as the two greatest health problems in American Indian communities. The
report called for the establishment of health clinics, systematic collection of vital
statistics and improved diet and health education at schools17 (Meriam 1928). In concert
with Indian New Deal legislation and following the conclusions of the Meriam Report on
health in Native American communities, the Bureau of Indian Affairs funded the
systematic study of tuberculosis in these communities to try to identify what quality in
Native Americans caused this increased susceptibility to tuberculosis. As a result of the
study of tuberculosis in American Indian communities, racial ideas of disease
susceptibility were scientifically rejected and social causes were identified as the source
for the higher incidence and prevalence of tuberculosis in Native American communities
(Alley 1940; McMillen 2008; Young 1994). Over 50 years before Merril Singer proposed
17
As discussed in chapter 3, these are the same strategies adopted by the IHS after decades of study of
diabetes in Native American communities.
38
the concept of syndemics, tuberculosis researchers in the IHS described “bionomic”
factors consisting of adverse social and economic factors as responsible for disparities in
tuberculosis epidemiology in Native American communities (McMillen 2008).
Nevertheless, the institutionalization of American Indians as natural subjects of
biomedical investigation that was fostered by the study of tuberculosis and other diseases
persisted because of the scientific and economic utility18 of having populations with high
rates of a disease that are also available for medical research. Herbert Burns, the director
of one of the sanatoriums where such research occurred, observed that Native American
communities were ideal populations for general tuberculosis research because of the high
rates of tuberculosis in those communities (Burns 1932). Breakthroughs in tuberculosis
vaccination and understanding of tuberculosis were produced through decades-long
studies of epidemics in Native American communities and the cooperation of the Bureau
of Indian Affairs and private research institutions (McMillen 2008; Young 1994). Despite
this breakthrough and the near eradication of tuberculosis in most communities in the
United States, tuberculosis has persisted in Native American populations (IHS 2011;
Schneider 2005).
18
From a scientific perspective, Native American communities have both a generous sample size for the
biomedical study of disease and have long histories of medical data available. Thus, the longer that these
groups are studied, the more their value increases for any type of scientific study. For example, the detailed
medical records that are collected for studies of diabetes can then be used to study other diseases at a later
date.
39
CONTEMPORARY BIOMEDICAL DISCOURSES ON DIABETES, GENETICS AND
IDENTITY
Longitudinal studies of Native American communities have generated biomedical
insights into the mechanisms of Type 1 and Type 2 diabetes that have disproportionately
benefited non-Native American communities. In this regard, the study of diabetes in
Native communities mirrors the earlier study of tuberculosis in American Indian
communities. Much like the study of tuberculosis, extensive research has been conducted
in an attempt to identify a thrifty gene. The continued pursuit of such a gene reflects
persistent racial ideas of disease susceptibility rather than a scientific rigor to exhaust all
possibilities before accepting the null hypothesis (that the differential etiology of diabetes
in indigenous communities is not caused by an indigenous thrifty gene). The
identification of genes involved in diabetes susceptibility has been used to justify
continued genetically-based diabetes research. However the rationale of focusing such
genetic research on Native American communities, the existence of a thrifty gene that is
not present in white communities, has not been given its own scientific analysis.
“The Uniqueness of the Community” – Genetic Studies of the Etiology of Diabetes in
Tohono O’odham and Achimel O’odham (Pima) Communities
Studies of diabetes in Tohono O’odham and Achimel O’odham19 communities
has generated a vast amount of medical knowledge about cellular mechanisms involved
19
As discussed in Chapter One, medical literature persists in the use of Pima to describe a diverse group of
O’odham communities that includes the Tohono O’odham and Achimel O’odham.
40
in diabetes and effective methods of diabetes prevention. Described as the population
with the highest rate of diabetes in the world (Narayan 1996), the O’odham have also
been intensively studied by scientists conducting diabetes research. Since 1962, NIH and
NIDDK scientists have conducted longitudinal studies of diabetes in O’odham
communities. The NIDDK scientist Clifton Bogardus claims that the NIDDK has
collected genetic samples from “well over 90 percent of the people on the reservation at
least once. We know the families, and DNA has been collected from them routinely since
the mid-1980s” (De Mouy 2002b). These genetic studies have generated data about the
metabolic processes involved in diabetes that have helped with the development of
strategies and pharmaceuticals to prevent diabetes. Such data includes the role of
maternal nutrition in diabetes risk (McCance 1993), obesity as a risk factor (De Mouy
2002a), high insulin as a risk factor (De Mouy 2002a), biochemical pathways of insulin
resistance (De Mouy 2002a), and high blood pressure as a comorbidity (McCance 1993;
Narayan 1996; De Mouy 2002a). Indeed, a pamphlet published by the NIDDK praises the
value of the O’odham as a resource for generating important medical knowledge: “The
Pima Indians' help is so important to the ability of doctors to understand and treat
diabetes, obesity, and kidney disease because of the uniqueness of the community. There
are few like it in the world” (De Mouy 2002a). This observation is strongly reminiscent
of Herbert Burns’ (1932) observations 70 years earlier about the utility of Native
American populations for tuberculosis research.
Despite the failure to locate a thrifty gene, scientific research on the genetic
etiology for diabetes in the O’odham community has persisted and continues to generate
41
information about the genetic and cellular mechanisms and risk factors for diabetes in the
wider population. Because of the thrifty gene heuristic used to explain differential rates of
diabetes epidemiology and the highly formal nature of scientific research, a selfreinforcing pattern of diabetes research has emerged. This pattern classifies a
homogenous and “pure” Native American study group to use for the identification of a
potentially diabetes-related gene. The variations for that gene are then compared to a
larger Native American sample (or occasionally a non-Native American indigenous
population) and to a non-Native American population (frequently Caucasian). The
comparison of a homogenous Native American variant (i.e., all of the genetic variation
within a tribe) to a heterogeneous Native American population (i.e., an inter-tribal group)
tests for the presence of a variant that would predict diabetes susceptibility in American
Indian communities, a thrifty gene. If found, such testing would be invaluable in
identifying individuals at risk for diabetes and for engaging in early, preventative
treatment in indigenous communities. Comparison of the homogenous and heterogeneous
Native American variants to the non-Native American variants tests for a universal
variant that predicts diabetes susceptibility in humans. Thus far, the studies have failed to
identify a variant common across indigenous populations, leading to suggestions for
further research to either locate additional variants or develop improved methodology for
the comparison of alleles. However, the tests frequently produce useful knowledge about
the cellular mechanisms affected by the gene in question. Native American populations
are particularly useful for identifying such genes because of the large sample size of
related individuals with diabetes who are willing to participate in medical research. While
42
the O’odham community, with the highest rates of diabetes, is the most common subject
of medical research, most reservation populations provide suitable reservoirs of related
individuals with high rates of diabetes available for medical research. When comparison
of homogenous and heterogeneous population samples fails to find a common variation
of the gene responsible for diabetes susceptibility, then further testing is recommended,
with Native Americans as the logical subject. This model ensures a steady production of
medical knowledge about diabetes with a minimal expenditure of research and funding to
locate the genetic causes and cellular mechanisms for diabetes.
Ataxin-2 Binding Protein (A2BP1) Gene
A 2010 study of the A2BP1 gene used a population of 413 “full heritage” Pima
Indians to identify the A2BP1 gene as associated with percentage body fat in Pima
populations (Ma et al. 2010). The study then compared the A2BP1 variants across 3,234
“full heritage” Pima Indians; 1,426 French adults; 1,392 French children; 1,149 Amish
adults; 998 German children and 2,531 Native Americans. The study found that different
variations in the A2BP1 gene were associated with obesity in Pima and French
populations, although no association could be found in the more mixed Native American
study group or the other Caucasian study groups. The correlation within populations was
strong; the intron 1 variant in the A2BP1 gene (rs10500331) in Pima populations had a pvalue correlation with obesity of .00000019 (anything lower than .05 to .01 is considered
to be statistically significant), while in French populations the correlation of the adult
43
intron 1 variant (rs4786847) was even stronger: .00000000019. Strangely, the population
of French children exhibited a different intron 1 variant than the adult population,20 also
with a strong statistical correlation. The study also examined the A2BP1 gene in mice,
where suppression of the A2BP1 gene illustrated the cellular pathways by which the gene
contributes to the regulation of body fat. The study concluded that although no one
variant was associated with obesity (i.e., a Native American thrifty gene was not located),
specific variants could be associated with obesity and the gene itself was significant in
the regulation of body fat. Although the study did not mention the thrifty gene theory by
name, it did suggest additional research to find variants of the A2BP1 gene associated
with non-Pima Native Americans. The study was funded by grants from national and
international health programs, namely the NIH, the NIDDK, the Baltimore Diabetes
Research and Training Center, the American Diabetes Association (ADA), the European
Community integrated project grant (PIONEER) and the Deutsche
Forschungsgemeinschaft (DFG) (Ma et al. 2010). While no IHS funding appears to have
been used for the study, the interest of such national and international organizations in
funding research illustrates the utility of Pima test subjects and a wider pattern of
exploiting Native populations for broader diabetes research.
Apoptosis Signal Regulating Kinase 1 (ASK1) Gene
A 2010 study of the ASK1 gene also demonstrates the pattern of exploiting
20
The intron 1 variant was rs8054147, although it is not clear if the French adult population sample and the
French child population sample were pulled from the same basic population.
44
Native American populations for the production of medical knowledge about diabetes
(Bian et al. 2010a). A genome-wide association study of 536 non-Diabetic Native
Americans was used to identify genes associated with obesity, decreased insulin
resistance and impaired insulin secretion. Of the identified genes, ASK1 was found to be
associated with the expression of insulin. When single nucleotide polymorphisms (SNP)
in the ASK1 gene resulted in reduced expression of the gene, in vivo insulin action also
decreased (i.e., insulin resistance increased). The study then examined the genotype of
3,501 “full-heritage” Pima Indians and 3,723 “mixed-heritage” Native Americans who
were described as 75% Native American and 50% Pima. Among the Pima study group,
eight representative SNP variants for the ASK1 gene were identified for study (31 total
SNP variants were identified) and three of those variants were correlated with type 2
diabetes: rs35898099 (P = .003), rs1570056 (P = .007) and rs7775356 (P = .04). The first
SNP variant’s (rs35898099) correlation with type 2 diabetes was replicated in the mixedheritage group as well (P = .04), although given that the second group was at least 50%
Pima, this correlation does not indicate the discovery of a thrifty gene. The second variant
(rs1570056) correlated to the presence of type 2 Diabetes in the Caucasian study group (P
= .026) of 10,128 individuals (these individuals had participated in a 2008 genome-wide
association study, because the 2008 study did not include the rs35898099 variant, that
variant was not tested for). The Caucasian variant was selected for further in vivo study
of the ASK1 gene, and that variant, specifically, was found to correspond to insulin
resistance in muscle cells. Study of the Caucasian variant was performed by locating 153
non-diabetic Native Americans with the Caucasian variant to undergo fasting and
45
percutaneous needle biopsies with local anesthesia so that their ribonucleic acid (RNA)
could be extracted to test the expression of the ASK1 gene. While the study was able to
demonstrate the role of the ASK1 gene in insulin resistance and sensitivity, it
recommended further testing for determining the exact mechanism by which SNP
mutations of the ASK1 gene affect insulin sensitivity. The study was funded by grants
from the NIDDK, NIH and ADA.
The ASK1 study falls into the pattern of Native American genetic research
identified in this thesis. The study identified homogenous, heterogeneous and Caucasian
study groups and failed to locate a common variation responsible for diabetes across
Native American populations (the rs35898099 allele common to both Native American
study groups was not tested for in the Caucasian sample, so it was not demonstrated that
the variant was unique to Native American populations). Like the A2BP1 study, the
ASK1 study uses ethnic homogeneity to segregate study groups, with “full-heritage”
Pima Indians being the preferable subject. Like the A2BP1 demographic studies, the rates
of correlation within different sample groups of the same ethnicity were inconsistent.
However, the ASK1 study demonstrates the research value of the extensive diabetesrelated medical records that are present for Pima Indians and the invasive and lengthy
nature of the testing process. In particular, these records and the availability of Pima
Indians to participate in lengthy and invasive medical studies, allowed researchers to use
Pima Indians to investigate the variant identified as common in Caucasian populations.
46
Single-minded Homolog 1 (SIM1) Gene
A 2009 study of the SIM1 gene, which is known to cause monogenic obesity
when haplo-insufficiency occurs (i.e., one chromosome has a functioning SIM1 region,
but the other region does not, so the gene is not expressed as strongly as it would be if
both alleles were functional), was conducted to determine the role of the SIM1 gene in
polygenic obesity (Traurig et al. 2011). To identify SIM1 variants present in the Pima
population, portions of the SIM1 regions of a group of 96 Pima individuals classified as
“obese” were sequenced and 16 variants identified; 30 variants previously identified from
a Chinese study were also used. The researchers then created study groups composed of
3,250 Pima or Tohono O’odham Indians and 2,944 Native Americans of “mixedheritage.” Two of the variants were also examined in French study groups composed of
1,275 obese individuals and 1,395 “lean control subjects.” The 46 variants were grouped
into seven haplotypes (A through G). Variants in the E and F haplotypes were associated
with body mass index (BMI) in the Pima study group (P values between .005 to .000007)
although the two variants selected for comparison to the French study group were present
in the French study group, they were not associated with BMI. The study did not do any
follow-up research on the metabolic pathways affected by the SIM1 gene. The research
was funded by grants from the NIDDK, NIH and ADA.
While statistically demonstrating patterns of research selection and knowledge
production surrounding the genetic research of Diabetes in Native communities could
easily comprise an entire thesis, the three examples described above illustrate a circular
47
narrative of genetic research focused on Native American bodies21. It would be
interesting to compare the correlation of studies where common risk variants were
identified in both Native American and Caucasian populations with studies where followup research on the metabolic mechanisms of insulin resistance or obesity were conducted.
Such comparison would provide further illumination of the ways that research practiced
on Native American bodies is exported for the benefit of other communities. It is also
important to note that ideas of racial disease susceptibility are reflected in the consistent
separation of study groups into those that are considered more Native American (full
heritage) and less Native American (mixed heritage). Other studies with similar patterns
of research include the role of the HLA-DRB1 region in insulin secretion (Williams et al.
2011), the association of CNDP1 with diabetic nephropathy (Chakkera et al. 2011), the
association of ELMO1 variants with diabetic nephropathy (Hanson et al. 2010), the
association MBL2 with insulin resistance (Muller et al. 2010) and the association of
ACAD10 with insulin resistance and lipid oxidation (Bian et al. 2010b).
Despite the decades of medical research and focus on O’odham communities, and
the wealth of knowledge about diabetes produced by it, high rates of diabetes in O’odham
communities have persisted among adults and increased among the youth (Pavkov et al.
2007). This example of exploiting an American Indian community to gather medical data
without providing appropriate compensation for such knowledge has been and continues
21
Historically the absence of non-white ethnicities from clinical trials has also contributed to social
disparities because drug safety and efficacy is evaluated based primarily on white communities (Baer et al
2003; Singer and Baer 1995). The NIH Revitalization Act of 1993(PL 103-43) requires the inclusion of
women and minorities in clinical testing. However, as this chapter demonstrates, the incorporation of such
communities into medical testing can reinforce, rather than ameliorate health disparities.
48
to be a mechanism of structural violence practiced against indigenous communities
world-wide (Borofsky 2005; Napier 2002; Smith 1999). In the case of Native American
communities, this structural violence is portrayed as aid to Native American
communities, despite examples such as the O’odham in which no health improvement
has been demonstrated despite decades of research (Pavkov et al. 2007). By addressing
diabetes as a purely biological pathology, existing socioeconomic inequalities are
maintained and medical data about diabetes that is useful outside of the Native American
community is extracted with no real gains for study participants. In this way, Native
American bodies remain sick, ensuring their continued availability as sources of medical
knowledge that will disproportionately benefit the health of white populations.
Reclaiming Genetic Identity – Havasupai v. the Arizona Board of Regents (ABOR)
Research on the Havasupai Tribe of the Grand Canyon offers an important point
of comparison, as it illustrates not only the targeting of Native American communities for
biomedical research, but also Tribal resistance to such exploitation. In the 1990s,
members of the Havasupai Tribe provided DNA samples to Arizona State University
researchers for the purpose of diabetes research. Without obtaining consent, the samples
were subsequently used for additional, unauthorized, medical research into alcoholism,
schizophrenia and depression, and demographic research into the origins of Havasupai
ancestors (Harmon 2010). The additional research generated at least two dozen articles.
As Havasupai tribal council member Carletta Tilousi observed: “I’m not against scientific
49
research… I just want it to be done right. They used our blood for all these studies,
people got degrees and grants, and they never asked our permission” (Harmon 2010). The
demographic research contradicted Havasupai origin stories; the Tribe’s vice chairman,
Edmond Tilousi expressed distress that the unauthorized research undermined the
sovereignty of the Havasupai tribe: “Our coming from the canyon, that is the basis of our
sovereign rights” (Harmon 2010). The Havasupai experience illustrates the vulnerability
of a population with high rates of multiple diseases that is also eager for medical research
because of the perception that such research will benefit the affected community.
In the late 1980s John Martin, an anthropologist working with the Havasupai, was
asked by them to research possible causes for the high rates of diabetes within their Tribe.
Martin approached Therese Markow, an ASU genetics professor, about looking into the
possible genetic causes of diabetes among the Havasupai. Therese Markow’s primary
research focus was schizophrenia, and she used the blood samples ostensible gathered
solely for diabetes research to benefit her schizophrenia research as well. From 1990 to
1992, blood samples were gathered from more than 200 Havasupai. In exchange for the
samples, the tuition for summer classes at ASU was waived for 15 tribal members.
Ironically, Markow quickly published a 1991 paper arguing for no genetic foundation for
the disparate diabetes rates within the tribe, since there was so little genetic variation
within the tribe. Four doctoral dissertations, academic papers on evolutionary genetics,
and medical papers on schizophrenia and inbreeding were published based on the blood
samples. In 2003, Havasupai Tribal Member Carla Tilousi learned about the additional
50
research being performed with the blood samples and relayed her concerns to other Tribal
Members (Harmon 2010; Havasupai v. ABOR 2008).
ASU failed to resolve Havasupai concerns about the blood samples and the issue
of the misuse of those samples led to several court cases. In April 2003, ASU promised
the Tribe that it would look into the additional research and in May 2003, the Havasupai
banned all ASU faculty and staff from reservation lands. In order to avoid a pressconference, ASU proposed a Joint Confidentiality and Cooperative Investigation
Agreement with the Havasupai that would investigate the collection and use of the blood
samples. Following the report publication, counsel for both sides met, but failed to reach
a settlement (Havasupai v. ABOR 2008). In September 2003, the Havasupai Tribe filed a
Notice of Claim letter and filed an additional two Notice of Claim letters in March 2004.
The first letter claimed that (1) ASU conducted genetic testing unrelated to diabetes
without consent, (2) ASU published private information related to Havasupai blood
samples in papers unrelated to diabetes, (3) ASU re-distributed Havasupai blood samples
to third parties without consent (the papers published with this data were also published
without consent) and (4) that ASU still had not accounted for all of the blood samples.
The second letter reiterated that ASU still had not accounted for all of the blood samples
and indicated that the Havasupai would settle for $50 million. The third letter reiterated
the first two letters and accused the ASU faculty of failure to “obtain informed consent,
fraud, misrepresentation, fraudulent concealment, intentional infliction of emotional
distress, negligent infliction of emotional distress, conversion, violations of civil rights,
51
negligence, gross negligence and negligence per se” (Havasupai Tribe in Havasupai v.
ABOR, 2008:P13). In March 2004, the Havasupai tribe filed state and federal claims
against ABOR and Markow. The case was remanded to state court, where ABOR and
Markow argued that the notices were improperly served, that the first claim failed to
specify a settlement amount, while the last two claims were untimely. The superior court
agreed that the Havasupai claims did not provide facts to support the $50 million
settlement request.
From August 14, 2003 to March 4, 2004, Carla Tilousi and other Tribal members
(the first letter represented 29 Tribal members, by the fourth letter, 52 Tribal members
were represented) also filed Notices of Claim. The letters listed similar damages, but
requested individual settlements. In February of 2004 Tilousi and 51 other Tribal
members filed against ABOR and individual defendants including Markow, Martin and
Benyshek. Similar to the Tribal lawsuit, the court sided with the defendants that the
claims did not provide sufficient evidence for settlements.
In 2008, both the Tribal claims and the Tilousi claims were heard by the Arizona
Court of Appeals. Both the Arizona Superior Court and the Appeals Court refused to
consider the Hart report as evidence for the settlement amounts, even though the Tribe
and Tilousi et al. argued that the inclusion of the report was implied in claim letters.
However, the appeals court concluded that the Tribe’s first two letters (the third letter
was dismissed as untimely) provided sufficient evidence to justify the settlement amounts
and reversed the superior court judgment. This reversal would allow the Havasupai case
to proceed to trial. In April of 2009, the Arizona Supreme Court heard an appeal to the
52
2008 Appeals Court decision. The Arizona Supreme Court denied the ABOR separate
petition for review as well as the Theresa Markow separate petition for review. The John
Martin and Daniel Benyshek separate petition for review were granted (Havasupai Tribe
v. ABOR et al., 2009).
In 2010 the Havasupai Tribe and Arizona State University agreed on a settlement
for the unauthorized use of the Tribe’s DNA samples, rather than proceeding with the
lawsuit. The samples were returned to the Tribe; both Arizona State University and the
Arizona Board of Regents issued a formal apology to the Havasupai; a total of $700,000
in damages was awarded to individual members of the tribe; scholarships were
established for Tribal members and ASU partnered with the Havasupai to collaborate on
public health, educational, economic and engineering projects including a new health
clinic and high school (Arizona Board of Regents [ABOR] 2010; Harmon 2010).
The Havasupai case offers an example of how indigenous DNA is appropriated
into scientific narratives (Reardon and Tallbear 2012; Smith 1999). Multiple lawsuits
were filed before the Havasupai could re-assert control over their own blood samples and
DNA. Because the case was settled out of court, no precedence was set regarding genetic
research (Harmon 2010; Reardon and Tallbear 2012). However the case illustrates how,
in the name of scientific research, genetic material became a scientific commodity
completely divorced from the narrative or control of the Havasupai people. A key aspect
of the settlement was the return of the blood samples. In many ways, this case mirrors the
federal Native American Graves and Protection Act (NAGPRA), which requires the
53
return of Native American human remains, funerary objects, sacred objects and objects of
cultural patrimony. The Kennewick Man legal precedent severely reduced the ability of
Tribes to claim their ancestors (Bonnichsen v. United States, 2004), while the 2010
update to NAGPRA that specified the disposition of culturally unidentifiable human
remains greatly increased the ability of Tribes to make such claims (Dalton 2010).
Currently scientists in California (White v. University of California, 2012) have a lawsuit
pending that attempts to circumvent the 2010 NAGPRA update by applying the
Kennewick Man precedent to argue that older burials are not “Native American” and thus
not subject to NAGPRA (White v. University of California, 2012).
The Havasupai and NAGPRA examples illustrate how Native people continue to
fight for control of their own identities at the basic biological levels of DNA, blood and
bones. While scientists may initially appropriate the narrative told by DNA, this
appropriation is not uncontested. The Havasupai example, while not a clear legal
precedent, is still a strong precedent for the acknowledgement that it is Native peoples
rather than scientists who have ultimate control over the narrative construction of their
identity. The settlement with Arizona State University illustrates the possible future
course of such narratives, which is not to halt all scientific endeavors, but to re-negotiate
such inquiry to give greater control to Native communities and to ensure proportionate
benefits to Native communities.
54
MECHANISMS OF STRUCTURAL VIOLENCE EMBEDDED IN MEDICAL
RESEARCH
By locating Native American bodies as the subject of medical research, health
stereotypes are recreated and socioeconomic disparities are maintained through the
redirection of health care funding and medical knowledge from American Indian to
“white” communities. Given the inherently racial aspects of the thrifty gene theory,
frameworks of whiteness (Harris 1993; Lipsitz 1998) are buttressed and reproduced
through research on Native American bodies, reinforcing the authority of white
institutions of health and research. Health disparities are thus both literally and
symbolically reified rather than ameliorated. The persistence of disproportionately high
rates of diabetes in American Indian communities continues the narrative of an unhealthy
American Indian identity. In comparison to “unhealthy” American Indian communities,
white communities are implicitly defined as healthy. This dichotomy is maintained by the
use of Native American populations to generate medical knowledge about diabetes that is
disproportionately available to white communities. Similarly, the authority of research
institutions to situate Native American bodies (rather than white bodies) as the subject of
medical research reinforces the narrative authority of white communities to construct the
identity of Native Americans. However both symbolic and legal resistance to this
assertion of authority can be seen in the Havasupai lawsuits that successfully contested
the institutional authority of scientific researchers. Chapter Four discusses other methods
of resistance to the assertion of Native American identity frameworks of whiteness.
The theoretical framework of structural violence is complementary to that of
55
whiteness, as it illuminates the pathways by which these mechanisms have become
embedded in social institutions and practices to such an extent that they are accepted as
common sense. Paul Farmer (2003) in particular, has explored the ways that medical
research and limited access to healthcare constitute mechanisms of structural violence.
This chapter has illustrated how the combination of racial ideas of disease etiology in
combination with the poverty and malnutrition experienced by Native communities led to
the institutionalization of Native communities as the subject of medical research
disguised as a form of healthcare. Chapter Three explores how the adoption of
community-based healthcare and research has both broadened the reach of these
institutions of structure violence but also exposed these institutions to decolonizing
pressures by Tribal governments.
Similarly, theories of biopower demonstrate how institutional regulation of the
body and health, in particular, reify these discourses of whiteness (Foucault 1979). The
Native American body is created both as the subject of medical research and the locus of
extensive medical records through institutional programs to regulate the health of
American Indians. This construction of identity is a uniform experience of medical
treatment and research as experienced by Native American bodies and justified by the
responsibility of the Federal government to regulate toward the health of Native
communities. This identity construction as part of biopolitics is significantly expanded by
the increasing utilization of community-based approaches.
56
THEORETICAL FOUNDATIONS FOR THE PERSISTENCE OF STRUCTURAL
VIOLENCE IN CONTEMPORARY SOCIAL SCIENCE DISCOURSES ON
DIABETES AND THRIFTY GENE THEORY
Contemporary social science discourses focus on the socioeconomic aspects of
diabetes disparities in indigenous communities (rather than biological mechanisms of
disease) and have led to the emergence of a more syndemic approach to recent diabetes
prevention programs in Native American communities. However, these syndemic
discourses persist in defining Native American communities as the logical subject of
diabetes research in order to create epidemiological knowledge, which in turn increases
the value of Native American communities as a resource for health knowledge. For
example, a critique has arisen within the field of social science that questions the
scientific validity of the thrifty gene theory. The epidemiologist Robyn McDermott
(1998) argues that the thrifty gene theory creates confusion between genes and race,
precludes social explanations of diabetes epidemiology, and is therefore a collection of
methodologies rather than an authentic science. McDermott argues that social
explanations such as malnutrition, poverty, welfarism, and physical inactivity are
silenced by these biological explanations. This critique questions the scientific
authenticity of the thrifty gene theory, but accepts hegemonic discourses of science, such
as Native American bodies as research subjects. Nancy Scheper-Hughes, in her foreword
to the text, Indigenous Peoples and Diabetes, notes that:
Like all reductionist theories, the ‘thrifty gene’ is nothing if not a
57
‘thrifty’/nifty hypothesis,
one
that
simplifies
and
excludes
the
complexities, the bio-social interactions, and the intervening variables like
social class, gender and the impact of colonial and post-colonial
experiences of dispossession, forced migrations, and resettlement, chronic
malnutrition, segregation and social exclusion. [Scheper-Hughes 2006:xxxxi]
Adding a social and epidemiological etiology to the study of diabetes
epidemiology would enrich the types of knowledge generated by studies of diabetes in
Native American communities. This increases the value of Native communities as a
population to generate epidemiological knowledge about diabetes. McDermott does not
question the validity of Native American communities as appropriate subjects, she simply
shifts the justification for Native American bodies as subjects from a genetic explanation
to an explanation of epidemiology (i.e., high rates of diabetes within these communities).
The epidemiological critique of the thrifty gene discourses is simply that thrifty gene
discourses limit the scope of research. By adding the generation of social knowledge to
the study of Native American bodies, the epidemiological critique is complementary to
thrifty gene theories as a type of structural violence that reifies hegemonic discourses of
whiteness, reaffirming a dominant narrative that defines Native American and indigenous
bodies as socially (i.e., through poverty, sedentism, and obesity) and biologically
vulnerable.
58
CONCLUSION
This chapter has explored the discursive space of the biological etiology of
diabetes epidemiology in Native American communities both as a continuation of
historical narratives of whiteness and as a space of resistance to these narratives. While
contemporary approaches to the diabetes epidemic in Native American communities are
rooted in historical narratives of racial identity and disease susceptibility that exploit
American Indian communities to generate medical knowledge, Native communities are
increasingly challenging these narratives, as illustrated by the Havasupai lawsuit against
the Arizona Board of Regents. The Havasupai example also illustrates the fallacy of the
common straw man argument that Native communities, by resisting the structural
violence embedded in scientific research, are opposed to scientific research. The
community involved was aware of the utility of scientific research and continued to be
actively involved in such research, but not without altering its form to support the
sovereignty and welfare of their Tribe, rather than hegemonic discourses of whiteness.
59
Chapter 3
THE EMERGENCE OF A SYNDEMIC BIOMEDICAL DIABETES DISCOURSE
By adopting a syndemic approach within the traditionally biomedical healthcare
construct of the IHS, American Indian identity is foregrounded and cultural relationships
become subjected to the critical scrutiny of empirical, western medicine. American
Indian identity is constructed at the cultural level based on beliefs about health and
diabetes. The previous chapter focused on how racial ideas of genetic susceptibility are
linked to the use of Native American bodies as ideal loci for the study of diabetes and the
associated construction of a biological Native American identity. Much like the
tuberculosis studies of the early 20th century, as diabetes research has led to the
realization of a social etiology for the disparate rates of disease, a more syndemic
approach to its study and treatment has emerged. This syndemic approach has shifted the
focus of biomedical studies to include cultural relationships and social roles, including
age cohorts, maternal roles, family relationships, community structure, perceptions of
food and activity.
THE INCORPORATION OF A SYNDEMIC APPROACH IN THE IHS
The syndemic approach to diabetes study and treatment at the IHS can be traced
to the 1990s, and more specifically to community based trial programs that emerged in
the next decade. In the 1990s, Native American communities lobbied Congress for
60
increased health services and programs to address diabetes in American Indian
communities. In 1997, Congress created the Special Diabetes Program for Indians
(SDPI), which allocated $30 million in annual funding. This was increased to $70 million
in 2001, $100 million in 2003 and $150 million in 2004 (IHS 2008d). Currently, SDPI
funding is used to operate 399 programs at IHS, tribal and urban clinics in 35 states. Of
the 399 programs, 361 are community-based ($110 to $116.4 million) and 66 are
Demonstration Projects that are scientific in nature ($27.4 million). An additional $5.2
million in funding is used to improve methods of data collection and analysis of diabetes
in American Indian communities (IHS 2008b, 2008c). The shift towards more
community-based studies and diabetes prevention programs represents commitment to a
syndemic approach. The Demonstration Projects funded by the SDPI embody the
persistence of more traditional biomedical approaches and received 19% more funding
per project, on average, than the community-based projects (IHS 2008a, 2008b, 2008c).
Similarly, the funding allocated to improve data collection and reporting illustrates that
these community based programs are still being used to collect medical data about Native
American bodies. Indeed the IHS cites, as evidence of the success of the SDPI, the
following accomplishments over a 10 year period: a 13% reduction in mean blood sugar
levels in American Indian communities, a 17% reduction in LDL, a 33% reduction in the
prevalence of protein in the urine, 98% success rate in establishing diabetes teams for
SDPI projects and a 67% success rate in establishing diabetes clinics for SDPI projects.
American Indian communities are still being used to generate scientific data, despite the
transition to a syndemic approach to diabetes prevention and treatment. The same fact
61
sheet also claims that by 2006, 99% of IHS programs successfully tracked patients
through diabetes registries (IHS 2008b).
From the perspective of critical medical anthropology, biomedical research is
often funded in place of patient care. This substitution of research for healthcare dollars
renders biomedical research into a mechanism of structural violence. The continued
collection of medical data remains problematic in these community-based approaches.
While these approaches include prevention and treatment components not present in
purely biomedical diabetes prevention program, the continued collection of medical data
generates knowledge about diabetes prevention and treatment that has significant value in
the general prevention and treatment of diabetes. As discussed in the previous chapter
this use of healthcare institutions and funding to generate medical data from targeted
populations is a biopolitical mechanism that functions to reinforce hegemonic discourses
of whiteness.
CULTURAL RELATIONSHIPS AND THE SYNDEMIC APPROACH
By targeting entire communities for diabetes education and outreach, American
Indian identities are constructed as constantly at an increased risk to diabetes—from the
womb until the inevitable onset of diabetes. Diabetes programs often focus on: (1) youth
at risk of diabetes, (2) mothers at risk of transmitting diabetes to their children, (3) adults
at risk for diabetes and (4) adults living with diabetes. In addition to this demographic
focus, diet and exercise often become the subject of scrutiny. While study and treatment
62
programs may focus on targeted demographics, treatment programs are often united by a
common, pan-Indian theme that frames healthy foods, relationships, and activities as
traditional.
This trend of focusing on demographic cohorts can be seen in the curricula that
the IHS has developed for patients and communities. As of January 2012, the IHS has
developed or assisted with the development of seven diabetes curricula, (1) Youth Staying
Healthy: A Diabetes Prevention Curriculum for Youth Ages 8-12, (2) Youth Staying
Healthy: A Type 2 Diabetes Curriculum for Teens, (3) Balancing Your Life and Diabetes,
(4) Balancing Your Food Choices: Nutrition and Diabetes, (5) Beautiful Beginnings:
Pregnancy and Diabetes, (6) Honor the Gift of Food and (7) DETS.22 Three of these
curricula focus on youth (the two Youth Staying Healthy curricula and the DETS
curriculum), one on mothers (Beautiful Beginnings), two on adults living with diabetes
(Balancing Your Life and Diabetes, Balancing Your Food Choices) and one on adults at
risk for diabetes (Honor the Gift of Food). Similarly, the NIH, which has sponsored much
of the diabetes research discussed in the previous chapter, developed: (1) I Can Lower my
Risk for Type 2 Diabetes: A Guide for American Indians, (2) Take Care of Your Heart,
Manage Your Diabetes, (3) Ten Ways American Indians Can Prevent Type 2 Diabetes,
(4) The Pima Indians: Pathfinders for Health, (5) We Have the Power, (6) Choosing
Good Food, (7) Native Americans and Diabetes, (8) A Pima Mother and Her Daughters:
Controlling and Avoiding Diabetes and (9) the Pima Indians: Donna Young: Losing
22
These curricula are available in digital format either on the IHS website or websites linked to by the IHS.
The IHS website also provides a link to an online catalog where patients with diabetes, K-12 teachers, or
health care providers are encouraged to order hardcopies that are distributed at no charge (IHS 2008a).
63
Weight to Avoid Diabetes (NIH 2012) .
YOUTH DIABETES CURRICULA: TWO APPROACHES
The act of incorporating diabetes education into tribal school curricula
discursively institutionalizes American Indian communities as loci of diabetes and
enculturates American Indian youth to recognize their position as subjects of diabetes
research. The high incidence of diabetes in American Indian youth has made them the
target of syndemic, pan-Indian diabetes education programs that directly link Native
identity with health and well-being through the locus of tradition. The IHS Division of
Diabetes Treatment and Prevention Programs attributes their strong focus on youth
curricula and education programs to both the dramatic increase in incidence and
prevalence of diabetes in American Indian youth and to the corresponding life-time
burden that this places on the individual and the health-care system (IHS 2008b). From
1994 to 2004, American Indian youths from age 14 to 19 experienced a 68% increase in
the incidence of diabetes.
Youth Stay Healthy: A Type 2 Curriculum for Teens
In concert with the Youth Stay Healthy: A Type 2 Curriculum for Teens, the IHS
published a Native Youth Lead the Way series of eight posters showcasing seven Native
youth. These posters juxtapose traditional activities and foods with contemporary
64
activities and foods using one of the following slogans [Staying Fit, Harvesting, Using
Your Talent, Being Multicultural, Being Active, Spending Time Outdoors] “is
traditional.” Posters include such information as the name, tribal affiliation, favorite
foods, and favorite activities of the youth. The use of these particular slogans on the
posters continues the broader IHS narrative of conflating “healthy” with “traditional.” In
one poster, Darret William Garcia (Shoshone/Paiute) poses in a martial arts uniform
while also wearing regalia items. In another poster, Arielle Cawston (Colville) poses in
street clothes, but includes a snapshot of herself in full regalia. Katelyn Joplin
(WhiteMountain Apache) poses at a gym in a t-shirt commemorating the 81st Annual
Mountain Apache Tribal Fair & Rodeo Family Fun Run. Joel Allen (Skokomish) poses in
a garden harvesting bell peppers. Evangeline Bradley (Navajo) poses with her clarinet
and a piece of regalia and lists performing the Sunrise Dance as a hobby. Heather
Yellowhawk (Hualpal) poses with a basketball and lists her favorite hobby as learning
about Hualpal culture and language. Joey Nastacio (Navajo) poses in front of a horse
while preparing to eat an apple. Each of the posters mixes visual and textual markers of
health and of American Indian identity. The poster series underscores a pan-Indian
identity that bridges traditional healthy activities and foods while also linking them to
healthy activities and foods that are distinctly contemporary and thus not normally
considered traditional. This bridging extends to the poster series’ viewers who are invited
to continue the ancestral tradition of healthy living by engaging in healthful activities,
thereby reinforcing their Native identity.
Unhealthy foods and activities are not visually represented in the Native Youth
65
Lead the Way posters, but are textually condemned as unhealthy and, by extension, nontraditional. Katelyn Joplin lists drinking water instead of soda pop as a new habit and
watching less than an hour of TV a day as her daily limit. Joel Allen lists soda, fast food,
drugs and alcohol as items he does not consume. Darrel Garcia avoids fast foods and
limits TV-viewing to 30 minutes a day. Evangeline Bradley lists drinking water instead
of soda as her health habit. Joey Nastacio reveals that switching from soda to water is a
habit that he is working on. The bios for Arielle Cawston and Heather Yellowhawk do
not list any unhealthy habits in need of change. By presenting healthy activities and food
as traditional, a pan-Indian standard of Native Youth as healthy and fit is evoked. By the
same logic, through the explicit rejection of unhealthy food (fast food and soda) and
activities (watching TV), an assertion is made that unhealthy food/inactivity is not a
component of American Indian identity. A persistent trend in the imagery and meaning of
diabetes in American Indian communities is one in which symbolically the disease is
constituted as the embodiment of alien cultural values and practice, the explicit site of
tension between the traditional and healthy Native American identity and an unhealthy
and non-traditional identity. Nonetheless, at the same time that diabetes is singled out, in
curricula and educational campaigns, as a condition that denotes a diet and suite of life
habits entirely unmoored in any expression of ancestral or contemporary Native
American identity— it persists in epidemic proportions in American Indian communities.
Diabetes Education in Tribal Schools (DETS)
The DETS curriculum includes material from Kindergarten through the 12th Grade. The
66
Grade school portion of the curriculum focuses on general information about health
through the use of posters, video (Round Dance), an Eagle book series,23 and lesson
plans.24 In the grades 5 to 9 curricula, the focus expands to include social science and
science components that discuss community health, family health, the origins of diabetes
in Native American communities and the biological pathways of diabetes. Griffin
Rodgers25 states that “DETS has provided NIDDK with an opportunity to reach beyond
supporting diabetes-related research to provide the resources to support the translation of
science to the community to have a more long-term beneficial impact on the health of
American Indian and Alaska Natives” (NIDDK N.d) A letter to the teachers that prefaces
the DETS curriculum workbook states:
The DETS curriculum includes K-12, multidisciplinary units that are
sequenced and inter-related to give a continuum of involvement with
diabetes-based education. The curriculum is based on national education
standards for the respective subject area, along with Native American
cultural content. Teachers can assist in this critical prevention education
effort while addressing the national content standards of their subject area.
23
The Eagle book series is a four-book series in which Mr. Eagle, Ms. Rabbit or Coyote teach the
protagonist about healthy foods and activities. The books were written by Georgia Perez, who has worked
for 19 years in Nambe Pueblo as a health representative. Patrick Rolo (Bad River Band of Ojibwe) and Lisa
Fifield (Oneida Tribe of Wisconsin, Black Bear Clan) illustrated the books. Just as with the DETS
curriculum, the CDC Division of Diabetes Translation’s Native Diabetes Wellness Program, the IHS and
the Tribal Leaders Diabetes Committee also helped to develop the books. The books have also been
translated into a museum exhibit: Throught the Eyes of the Eagle: Illustrating Healthy Living for Children
(Allen 2011); a teen series featuring a female, skateboarder protagonist; and video formats (Allen 2011,
CDC 2011).
24
The lesson plans are designed for educators at Tribal schools. A few of the lesson plans are discussed in
greater detail later in this chapter.
25
Griffin Rodgers is the director of both the NIH and NIDDK.
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Culturally relevant activities are incorporated in the learning to increase
the effectiveness of the diabetes prevention effort and to enhance students’
cultural awareness. [NIH et al. N.d.b:DETS:K-2 Curriculum Book:6]
The value of Foucault’s concept of biopower is evident here, since the letter to educators
illustrates the standardization of cultural knowledge necessary to the creation of a
uniform cultural perception of health and nutrition, and an idealized standard of Native
American health. The following analyses explore some of the material from this
curriculum to illuminate the ways in which this pan-Indian idea of health is constructed.
DETS Pre-Kindergarten to Second Grade Curriculum: Health is Life in Balance
The pre-kindergarten to second Grade component of the DETS curriculum
includes a 456 page workbook for instructors, a letter to parents or caregivers, and three
stories. The workbook and associated material focuses on inculcating the concept of
balance based on traditional healthy foods, traditional healthy exercises and traditional
healthy relationships. Diabetes is eventually introduced as an imbalance. The DETS
introduction incorporates the role of previous medical research into the curriculum,
describes the way that traditional knowledge is incorporated into the curriculum and
establishes the scientific validity of the curricular methodology.
In the introductory section titled Solutions Through Research, readers are told that
scientists at the National Institute of Health, with the help and participation of many
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Akimel O’odham (Pima) Indians, have identified ways that people with diabetes can
improve their health, through such means as the control and monitoring of blood glucose,
blood pressure and blood cholesterol. In particular, pregnant women with diabetes must
keep these blood factors under control and breastfeed in order to have healthy babies with
reduced risk for diabetes. From 1996 to 2001, the NIDDK Diabetes Prevention Program
(DPP)26 demonstrated that people at-risk for developing type 2 diabetes could reduce
those risks through diet and exercise. The Introduction does not stop with the historic
contributions of Native American research subjects to knowledge about diabetes, it
emphasizes that over 100 tribes are currently participating in demonstration programs
that develop techniques to reduce the risk of contracting type 2 diabetes. The DETS
curriculum is situated as one of the solutions to the diabetes epidemic developed through
scientific research and conforming to scientific standards of education and knowledge as
detailed in sections describing National Science Education Standards.
The cultural component of the DETS curriculum is inserted between these two
sections on science. This unit, entitled Life in Balance, is described as an attempt to
reflect a diverse set of beliefs from over 400 recognized and unrecognized Tribes. Oral
histories, storytelling, dance and the circle of balance are foregrounded in order to reflect
traditional ways of learning and knowing. The title of the DETS curriculum, Health is
Life in Balance, highlights the integration of scientific and traditional forms of
knowledge as curricular platforms. Frequent reference is made to scientifically-validated
26
Unlike the other research discussed here, the DPP program included 3,234 participants from a variety of
ethnicities, although American Indian and other at-risk ethnicities represented 45 percent of the
participants.
69
knowledge about the health of food or activities or the validity of the structure of the
curriculum itself, reinforcing scientific standards of inquiry. Cultural knowledge is
framed by scientific knowledge to demonstrate the scientific legitimacy of cultural
knowledge.
In the introductory section, Science as Inquiry, the DETS Health is Life in
Balance curriculum is contextualized in relation to National Science Education
Standards, which it meets by way of the following essential features: (1) learner engages
in scientifically-oriented questions, (2) learner gives priority to evidence in responding to
questions, (3) learner formulates explanations from evidence, (4) learner connects
explanations to scientific knowledge and (5) learner communicates and justifies
explanations. While the DETS curriculum may incorporate biomedical and traditional
knowledge, the epistemology remains grounded in Western science. It is often in the
lesson plans and components of the curriculum only seen by teachers that the scientific
validity of the structure and content of the lessons is described. For example, each unit is
prefaced with a description of how it meets National Science Education standards and
National Health Education standards. These unit prefaces are part of the teachers’ course
preparation materials, but are not part of the course material presented to students.
DETS Pre-K to 2nd Grade Stories
As discussed earlier, storytelling is a core component of the DETS curriculum.
The stories discussed below are packaged as part of the pre-K to 2 DETS curriculum and
70
are used, along with a series of Eagle stories, to convey traditional forms of knowledge in
a traditional way. Throughout the curriculum, scientific and traditional forms of
knowledge are frequently separated in this manner. When the two types of knowledge are
integrated, it is traditional knowledge that is framed within scientific knowledge, most
commonly by using scientific knowledge to demonstrate how traditional food or exercise
is healthy. Traditional knowledge is thus brought into the framework of scientific
knowledge, and not vice versa.
One of the three stories featured in the K-2 DETS curriculum, Odamin or Heart
Berry Story, illustrates how food and health are tied to family relationships. The story
begins with three cousins staying at their grandmother’s house. The cousins are not
getting along. To encourage the girls to get along, the grandmother asks one of the girls
to get a package of frozen strawberries from the freezer and tells the girls a story while it
thaws. The story is about a husband and wife who quarreled “long ago, when the world
was new” (Fontaine N.d.:4). The husband said things that hurt his wife’s feelings,
causing her to leave. After she left, the husband regretted his words and prayed to the
Creator to bring her back, promising that he would be kind in the future. The Creator
agreed to help the man if he apologized to his wife and kept his promise to be kind to her
in the future. In order to slow the woman down, so her husband could catch up with her
to apologize, the Creator put a series of berry trees and bushes in front of her hoping that
she would see the berries, stop crying and remember the happy times that she had spent
picking berries with her husband. Cherries, blueberries, blackberries, raspberries and
cranberries did not work, so the Creator made a new berry, the strawberry, to tempt her to
71
stop and harvest it. As the woman lingered to eat strawberries and remembered happy
things, her husband was able to catch up to her. They both apologized to each other for
quarreling and proceeded to eat strawberries together.
They enjoyed the berries together and remembered their happy times.
They remembered that they loved each other. Now their lives were getting
back in balance ... The berries reminded them to be kind to the people they
love and keep their lives in balance. That is why the Anishnaabe call
strawberries Odamin, which means heart berry. [Fontaine N.d.:10-11]
With that, the story concludes and the grandmother reminds the girls how much they had
enjoyed picking the strawberries that were thawing. The grandmother and girls ate the
strawberries, remembered good times and their hearts returned to balance as well.
The Odamin story frames a traditional story within a modern story to develop
ideas of health as a balance of food and cultural relationships. The use of Native language
to perform indigeneity and to assert the authenticity of speakers has been described by
Warren and Jackson (2002) in reference to South American identity discourses. In this
instance the invocation of the Anishnaabe word, odamin, highlights ancestral knowledge
and use of the strawberry, thus affirming its status as traditional food. The odamin links
the inner story of the husband and wife with the outer story of the grandmother and
cousins, demonstrating how traditional and healthy relationships revolve around food,
past and present. The strawberry as a pathway for emotional or inner health is heavily
emphasized, reinforcing the ability of healthy food to create healthy relationships. By
72
packaging the idea of happiness and harmonious relationships around this fruit, a strong
motivation is created in the audience to preferentially eat this fruit as a vehicle for
emotional happiness and enactment of tradition.
Another story in the curriculum, the Mishomis27 Story (Olson N.d.), has a similar
theme of associating healthy food with healthy relationships. While the odamin story
focuses on family relationships, the Mishomis Story emphasizes community
relationships. In Mishomis Story, a community in balance is highlighted. In this
community, a central figure, the Nokomis, is introduced as someone who prepares food
for the entire community. The community is united in gathering, preparing and enjoying
food such as carrots, beans, peas, corn, leaks, potatoes, mushrooms, strawberries,
blueberries, raspberries, blackberries, cranberries, rice, maple syrup, rabbits, birds, deer,
bear and whitefish. But two brothers quarrel over fishing prowess and each takes their
catch home, not wanting to share their food with the other. This attitude spreads as more
and more people take their food home instead of bringing it to the Nokomis to share with
others. Eventually there are no more group meals and the Nokomis leaves the community.
This departure as well as hunger prompts a few children to share some berries they have
gathered. The spirit of sharing spreads, leading to a great feast and the Nokomis’ return.
Like the odamin story, the Mishomis Story uses Native language to reinforce the
traditional nature of the story. In the Mishomis Story, people, in addition to food, are
named and referenced in Ojibwa including: the Nokomis, children (binoojinh), wild rice
(manomin), the river (Gitcheegoumee) and Mishomis. In this story, conflict drives away
27
Grandfather in Ojibwa.
73
food and disrupts relationships. Through sharing food, harmonious relationships and
community health are restored. In concert with the odamin story, the Mishomis Story
demonstrates the characterization of healthy traditional kin and community relationships
as well as the use of oral tradition to explain and legitimize the Native North American
discourse of balance as tradition.
DETS Prekindergarten to Kindergarten Unit
The prekindergarten and kindergarten unit of the DETS curriculum introduces a
pattern repeated in subsequent grades that involves discussion of the interconnectedness
of health, food, exercise and balance. The unit includes six lessons: (1) Snack Attack, (2)
What is Health?, (3) How to Balance, (4) More or Less: Everyday Food and Sometimes
Food, (5) Let’s Get Moving and (6) Showing What I Have Learned. The first lesson has
students count different types of snacks (cupcakes, apples, bananas or chips) to give them
practice with both numbers and the role of food quantity in diet.
The second lesson, What is Health?, is accompanied by a storybook, Through the
Eyes of the Eagle (Perez et al. 2004). The focus of the lesson is the ability of students to
distinguish between more or less healthy food and activities. In the story a boy, Rain That
Dances, meets a bald eagle, Mr. Eagle. Mr. Eagle tells Rain That Dances that he is sad
because of the sickness, diabetes that he sees in people today, making elders blind so that
they cannot see the world around them and causing them to be confined to wheelchairs, at
74
which point Rain That Dances becomes sad as well. However, Mr. Eagle also tells Rain
That Dances that people can become healthy again if they return to some of the
traditions, such as being active once again and eating foods that they used to eat. Mr.
Eagle promises to continue to meet with Rain That Dances to guide him on his journey to
return his people to health. This lesson introduces the concept of diabetes into the
curriculum as a disease that the students can prevent in themselves and their communities
by living traditionally and in balance. This lesson begins the process of establishing a
clear dichotomy between traditional (i.e. balanced) foods and activities and less healthy
foods and activities (often portrayed as not traditional). The word “unhealthy” is rarely, if
ever, used, instead certain foods and activities are described as “less healthy.” As diabetes
is incorporated into the narrative of traditional stories, becomes the fate of those who do
not follow the lessons taught by these stories.
The third lesson, How to Balance, teaches students what balance is by having
them balance both objects and themselves. Students practice standing on one foot as an
example of being out of balance. The teacher then makes the connection between being
healthy as being in balance (standing with both legs) and engaging in too many “less
healthy” things as becoming unbalanced. In Chapter 2 of this thesis, the physical realities
of medical testing and treatment as a consequence of diabetes were discussed. In the
lesson discussed in the previous paragraph, diabetes is described in terms of the loss of
sight and physical mobility. The threat of diabetes is similarly translated into something
that can be experienced by the human body: a lack of balance as experienced by standing
on only one leg. This lack of balance both mirrors one of the complications of diabetes
75
and reflects the very physical experience of diabetes. This metaphor of balance is the
curriculum’s chosen symbol to encompass cultural and scientific diabetes education
about food and activities. While diabetes is frequently referenced as the consequence of a
loss of balance, balance is the default (traditional) state of Native well-being that is taught
throughout the DETS curriculum. Thus traditional Native Americans do not have
diabetes.
In Lesson 4, More or Less: Everyday and Sometimes Foods, students learn to
distinguish between food types. The Eagle book Tricky Treats is used to show students
how to make food choices and they are advised to listen to elders, trusted adults or health
professionals in order to learn about healthy foods. In Tricky Treats, coyote tries to trick
Rain that Dances into eating unhealthy food in order to convey the lesson that some
sources will give the student incorrect information about healthy food. It is interesting
that neither the story nor the curriculum identifies where it is that students may be
hearing wrong information about the healthiness of food, just as the curriculum identifies
food as “less healthy” rather than unhealthy. Hutu Anape Foundation Chairperson Rick
Adams (2011) observed that in the clinical setting as well, health practitioners risk legal
repercussions if they identify particular foods as unhealthy. Just as the history of violence
and social inequality was often ignored in tuberculosis research and genetic diabetes
research, the DETS curriculum only tangentially addresses how Native American
communities came to be in an “unbalanced” state. This continued silence is consistent
with earlier federal healthcare initiatives, but contrasts with the Native food discourses
described in the next chapter of my thesis.
76
In Lesson 5, Lets Get Moving, the discourse transitions from food choices to
healthy activities. The lesson includes a discussion of the importance of traditional
activities, like the Round Dance, to staying healthy and it includes the Eagle Book Story,
Knees Lifted High. As part of the lesson, students participate in a Round Dance, led by
their instructor, and they take home a Round Dance educational letter for their parents,
caregivers or older siblings. While the primary focus of the DETS curriculum is
educating students about healthcare, clear effort is made to have students share their
knowledge with the rest of their family and community. The DETS curriculum includes
letters to parents and several take-home components designed to incorporate a student’s
family into the discussion of balance through healthy food and activities. Since the
student occupies the symbolic space of someone who is being taught, the discursive space
of “balance” is broadened when the student engages family and community. While the
symbol of balance developed by the DETS curriculum is based on a pan-Indian concept
of balance developed in concert with many Tribal leaders and educators, it is also a
concept informed by the scientifically-developed understanding of diabetes. This
scientific and traditional concept of Balance is used to create a dichotomy between
healthy or unhealthy diet and activity. When students ask family or community members
for specific examples of Native foods or activities that are “balanced,” then the
intellectual framework of balance that students use to evaluate these Native activities is a
hybrid of scientific and traditional knowledge. The student and, by extension, the
student’s family and community comprise the hybrid space in which scientific, panIndian and Native types of knowledge interact to construct a traditional Native identity
77
rooted in Western scientific conceptions of diabetes constituted through the study of
Native American bodies as naturalized objects of research.
In the final lesson for the pre-K/K curriculum, Showing What I Have Learned,
students distinguish between foods and activities that are either more healthy or less
healthy. They are instructed to select specific healthy foods to eat more of and specific
healthy activities that they should do more of in order to stay healthy. This cements,
through practice, the marriage of the traditional and scientific concept of balance to
evaluate Native and non-Native foods and activities.
DETS Grades 1 to 12 Curricula
The DETS Grades 1 to 12 curricula continue the development of a scientificallyinformed concept of traditional balance. Starting with Grade 7, the emphasis on science
and scientific inquiry increases. This transition is apparent in the curriculum titles.
The Grades 1 to 4 DETS curriculum continues to be labeled Health is Life in Balance.
Beginning with Grade 5, the DETS curricula identify social studies, science or health foci
and the titles of the curricula change accordingly. The DETS Grades 5-6 curriculum is
classified as social studies and titled All Life is Connected: Lifestyle, Environment and
Diabetes. The DETS Grades 7-8 curricula include a science component titled, A
Balancing Act, Preventing Diabetes, and a social studies component which retains the
title Life in Balance. The DETS Grades 9-12 health component is titled Diabetes and
American Indian/Alaska Native Health, while the science component is titled Life in
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Balance: Understanding Homeostasis and Diabetes. The social studies and health
components feature an increased focus on family and community action by bringing
messages of balance to a student’s community. The science components promote the
history of scientific research in Native American communities and encourage students to
pursue careers in science. In particular, the concept of balance originally taught to
students as a traditional concept is increasingly developed as a scientific concept related
to homeostasis and chemical balance within the body. In this way, science becomes part
of a student’s understanding of their traditional identity.
FOOD CURRICULA
Syndemic discourses of food in the IHS curricula are characteristic of other
syndemic IHS discourses in that they ascribe the quality of traditional to all healthy
foods, thus reinforcing the Native American identity of individuals who consume healthy
food. In 2006, the IHS published a Healthy Beverages Community Action Kit for
community activists and health providers. This text begins and ends with a set of historic
and contemporary Native Americans water prayers. These prayers come from a variety of
tribes (including Sioux, Navajo and Mohawk) and are set against images of nature, such
as a bald eagle flying over water or a waterfall in a forest. Within the Healthy Beverages
text, beverages are discussed in terms of nutritional value as measured in calorie count or
sugar content. The textual or spoken performance of indigenous language as a strategy
for marking social and cultural authenticity is well-documented by Laura Graham (2002)
79
and Warren and Jackson (2002). For instance, Yanomami peoples speaking to United
Nations officials and Non-Governmental Organizations (NGOs) wished to assert their
legitimacy and indigenous identity among their peers and before their audience without
the risk of a translator changing the content of their message, so they began and ended
(i.e. framed) their speeches in their own language (Graham 2002). In the Healthy
Beverages curriculum, linguistic framing is used by health officials at the IHS to present
the biomedically nutritious beverages described in the curriculum as culturally
appropriate to Native Americans. The use of a national symbol (the bald eagle) and
“wilderness” landscape (forest and waterfalls) are reminiscent of early 20th century
dialogs that appropriate Native American societies as United States patrimony and
sources of nationalist cultural distinction (Krech 1999). The intent of the Healthy
Beverages imagery is to evoke popular conceptions of an idyllic, pure and pre-contact
Native American past. In this sense, the Healthy Beverages Community Action Kit force
feeds Native Americans romanticized conceptions of their own ancestral identities in
order to legitimize certain “healthy beverages” as traditional to a Native American diet.
While western constructions of Native American identity are frequently imposed on
Native American communities, the syndemic focus on interlinkages between culture and
food is a defining characteristic of the current IHS response to the diabetes epidemic.
Most of the Healthy Beverages Community Action Kit content follows this example of
deploying stereotypical imagery and Native language to frame “healthy beverages” as
traditional. One of the water prayers includes a quote by Delores E. Starr, BS RDH
(Oglala Sioux Tribe): “Water is the Best Medicine for everyone. The best thing for Indian
80
Country is to drink sensibly with healthy drinks.” By describing water as both medicine
and as a healthy drink, the connection between traditional beverages and healthy
beverages is reinforced by the quotations that frame the curriculum.
This framing of healthy foods as traditional is also a part of nutritional education
at SNAHC. Cathy Carmichael, a dietitian at SNAHC, gives grocery store tours to her
patients and their families to demonstrate how to identify healthy foods, especially those
low in carbohydrates (Bartolone 2011). While these foods may not be part of pre-contact
Native diets, the practice of identifying, preparing and eating healthy foods is recognized
as a continuation of the traditional practice of identifying, preparing and eating healthy
food that typically took place in a family setting. Cathy Carmichael not only teaches
patients how to identify healthy foods, she goes to the grocery store with patients and
their families in order to define healthy food as a critical part of a family dialog. This
emphasis on the types of relationships that surround healthy food is a unifying element of
both the syndemic discourses analyzed in this chapter and the Native discourses
discussed in Chapter Four. The importance of re-framing traditional food as exclusively
healthy can be understood in the context of a 1990s study of supplemental food programs
described below.
A 1990s study of supplemental food programs in urban and rural American Indian
communities in California demonstrates how the structure of scientific research has
identified and paved the way for traditional perceptions of food to be brought into
communities by the biomedical establishment (Dillinger et al. 1999). This 1999 study
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looked at 40 families at the Round Valley Reservation who made use of USDA
government food commodities and compared it with 40 urban Indian families in
Sacramento who utilized food banks or food closets. As the article’s title, Feast or
Famine? Supplemental Food Programs and their Impacts on two American Indian
Communities in California, suggests, supplemental food programs in both urban and rural
American Indian communities offer an excess of unhealthy foods that leads to obesity
and chronic diseases such as diabetes, and a shortage of healthy foods like fresh fruit,
vegetables and lean meat. Similarly, nutritional education is limited in availability and
often identifies foods or provides recipes that require foods not available in supplemental
food programs.
By identifying the way study participants procured food, the type of food
available to them, and their access to nutritional information, the study linked (unhealthy)
food availability to American Indian ethnicity. Available food in both rural and urban
communities was high in sodium, sucrose and fat; and even when foods such as fruits and
vegetables that may be perceived as healthy were available, they tended to be available in
unhealthy forms such as canned vegetables high in sodium or canned fruits loaded in
sugar content. The infrastructure of the reservation (geographically isolated, high fresh
food prices as a result of that isolation, long-distance travel to government agencies to
enroll in food assistance programs other than commodities) increased the difficulty of
gaining access to healthy foods and nutritional information. The study also identified a
desire for culturally appropriate education about nutrition, preparation of healthy meals
and management of diabetes. This shift toward a syndemic understanding of diabetes is
82
consistent with the institutional shift seen at the IHS away from purely biological analysis
of epidemiology towards a package of syndemic diabetes prevention and treatment
programs. Similar to the biomedical research examined in Chapter 2, Dillinger et al.
(1999) identifies mechanisms of food procurement and consumption, as well as the
etiology of diabetes or obesity within these mechanisms, in a manner that generates
medical knowledge applicable to diabetes treatment outside of Native American
communities.
Unlike the biological studies described in the previous chapter, this study includes
the participant voices. In surveying the two study groups, it was clear that they were
aware of the unhealthy food choices offered through these supplemental programs, this
was frequently identified as a reason for electing not to use a program, and they were
frustrated with a system that made the procurement of healthy food so difficult. While the
study consistently identified the lack of a nutritionist on staff or the lack of awareness
about available nutritional counseling as problematic, it also surveyed the two groups for
preferences or ideas about how to improve the availability of nutritional education. The
responses included both increased accessibility through health services or schools
(workshops and newsletters) and increased accessibility through contemporary cultural
structures such as at powwows, big times or community potlucks (Dillinger et al. 1999).
While the syndemic approach of this study still conforms to the epistemologies of
biomedicine in generating statistically valid data in order to demonstrate a lack of access
to healthy food, it also initiates a dialogue with Native American communities aimed at
increasing access to healthy food and nutritional education.
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HOSPITALS AND COMMUNITIES
As a corollary to the syndemic focus on cultural relationships, the institution of
the hospital has expanded from a strictly biomedical space to a community space. Helen
Maldonado, director of the Health Traditions diabetes program, illustrates this shifting
view in her description of how healthcare should look to Native communities, namely
“patient-centered care. So it’s pretty much designed around what the community wants.
They would give their voice to the healthcare program saying this is what we want from
you, and to be able to hold their community gatherings, to be able to come together and
have a relationship with a healthcare provider” (Maldonado 2011). This expansion to
include a community space within the framework of an institution that was previously
devoted exclusively to the provisioning of biomedical space has the potential to subvert
the discourse and role of the hospital from a place that focuses on unhealthy Native
American bodies to a place that promotes healthy Native American communities and
identity. This thesis has been critical of the extension of biomedical program and
epistemology into cultural spaces, however it is important to note that the advent of
community-based healthcare occurred as a result of tremendous lobbying by Native
communities for additional and more effective diabetes treatment and prevention
programs and many of these programs are developed with significant input from Native
individuals or organizations (IHS 2008a, 2008b; NIDDK N.d.a; NIH 2012).While
syndemic approaches may well open up cultural spaces and cultural identities to the
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critical lens of biomedical discourses, in so doing they also open the symbolic space of
biomedical institutions to Native discourses. One example of a non-biomedical use of
hospitals can be seen in the popularity and persistence of practices such as diabetes
talking circles at clinics or hospitals. For example the Sacramento Talking Circle at the
Sacramento Native American Health Care Center (SNAHC), which meets every other
week at SNAHC, has grown to 175 people. Participants bond over how they are
managing their diabetes and discuss obstacles such as how to eat healthily in urban areas,
particularly on a budget (Bartolone 2011). Every other Tuesday, the clinic becomes a
community space where American Indian community health is created and recreated.
CONCLUSION
The adoption of syndemic approaches to diabetes prevention and treatment has
created a frontier space for colonizing and decolonizing discourses of Native American
cultural identity, Native American concepts of food, and the traditionally-biomedical
spaces of hospitals and clinics. These syndemic discourses push traditional cultural
concepts into biomedical spaces and epistemologies at the same time that they push
biomedical diabetes concepts into traditional spaces and appropriate traditional
epistemologies. While syndemic approaches prioritize the importance of traditional social
structures, the way that biomedical structures, such as the IHS, create syndemic
approaches can have the effect of pushing Western concepts into traditional spaces and
roles, as exemplified in the concept of balance seen in the DETS curriculum. The
mechanisms of biopower applied to the bare life of the symbolic Native American
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patient, as described in the previous chapter, are thus expanded to include the ability to
define Native American cultural identity and communities through the lens of bare life
(i.e., the regulation toward a biomedically informed diabetes-free life). This expansion of
biopolitics is particularly troubling in the context of persistent exploitation of Native
American bodies through mechanisms of biopower. However, syndemic discourses also
open the extensive resources of biomedical institutions to Native or traditional discourses,
as in the example of the re-structuring of hospital spaces. As discussed in the next
chapter, there are still significant barriers to the entry of Native discourses into these
biomedical spaces, however the emergence of Tribal discourses into these historically
exclusive spaces demonstrates that, much as in other frontier spaces, colonizing
mechanisms are often appropriated and re-purposed for de-colonizing strategies by
Native organizations or individuals.
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Chapter 4
NATIVE DISCOURSES AND DIABETES IN CALIFORNIA
The healing power of traditional forms of food gathering and preparation,
its highly ritualized and communal dimensions requires not only equitable
and sustainable food systems, but rights to the security of Indigenous
livelihoods, meaning rights to land, to labor, and to social and political
security, all of which are presently lacking for most of the world’s
Indigenous Peoples. [Scheper-Hughes 2006]
While biomedical healthcare practitioners are increasingly adopting a more
syndemic approach to diabetes prevention and treatment in Native American
communities, some Native communities are critically utilizing scientific discourses of
diabetes to support Native foods and the sovereignty necessary to obtain those foods. As
in syndemic discourses, an emphasis is placed on food and culture. However, these
narratives often go an extra step in arguing not only for a return to health, but a return to
Native foodways and communities. This narrative shift is similar to that found in
syndemic discourses, since the focus transitions from saving a dying and unhealthy
people to a revitalization to a normative, healthy state. Biomedical literature focuses on
techniques for extracting information about diseases, managing diseases or preventing
diseases in Native American bodies and is thus centered around the regulation of the
Native American body by biomedicine. In comparison, literature generated from within
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Native communities or through syndemic approaches is often centered around food,
culture or community, such as cookbooks or around stories or journeys. While syndemic
literature still includes a strong focus on Native American identity, the discourses
analyzed in this chapter focus on food and associated activities or epistemologies.
Identity is still significant, but it is negotiated through the locus of food rather than
directly. Ira Jacknis documents this renaissance of interest in traditional food and
attributes it to a growing recognition (among both Native and non-Native communities)
that traditional diets are healthier than contemporary diets (2006:89). While Devon
Mihesuah’s texts on a practical return to a more traditional diet are the most classical
example of this trend, the focus in this thesis is on the progression of this narrative in
California (Mihesuah 2005, 2009).
HISTORIC DISCOURSES OF NATIVE FOOD IN CALIFORNIA
Sherburne Cook’s essay, The Mechanism and Extent of Dietary Adaptation
Among Certain Groups of California and Nevada Indians (1941), is the seminal text on
historic dietary change in California Native American communities. The essay describes
the ways that Native food became unavailable to these communities. Cook proposes five
ethnologic principles related to dietary change, illustrated by the ethnographic example of
California and Nevada Indians. These five principles are that 1) a population will eat
anything to avoid starvation; 2) If a choice must be made between two diets then
economic availability, geographic availability, taste, and social usage will affect which
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diet is selected; 3) if either diet is available then these factors will still affect which diet is
selected; 4) Foods with higher availability will also be associated with a better taste and
vice versa. Therefore, 5) diet change depends on both a decreased availability of the
previous diet and an increased availability of a new diet. More recently, Ira Jacknis
(2006) reconfirmed that Cook’s original assertions persisted. Based on these principles,
high availability of inexpensive Western food, decreased access to traditional food—
based on inability to access land, labor intensive food production and loss of knowledge
about traditional food acquisition and preparation— Cook concludes:
During the past hundred years the process of nutritional adaptation has
followed in its general outlines the course predicated in the opening thesis.
Today we are witnessing the final stages of this process, which began in
the mid-nineteenth century and will require one or two more generations
to complete. [Cook 1941:506-507]
However, Cook’s assimilationist prediction was not entirely accurate. Instead, a strong
movement has emerged to return to Native diets, despite traditional foods being less
economically and geographically available than inexpensive and highly processed
Western foods. The reasons for this dietary revitalization are sometimes different than the
reasons that motivate dietary change listed by Cook, most noticeably a return to Native
foods is being emphasized based on the epistemological value of these foods. This
holistic emphasis calls not simply for the resumed consumption of these foods, but for
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preservation and inter-generational reproduction of the knowledge necessary to gather,
prepare and consume them. That knowledge is grounded in Native epistemologies, in
contrast to the syndemic approach, which requires scientific knowledge of nutrition and
exercise. A simplistic comparison would state that syndemic discourses present a return
to the healthy state as an act of returning to a traditional identity. Native discourses
present a return to Native foods, and by extension, ancestral identities as returning to a
healthy state.
THE VALUE OF NATIVE FOOD
When traditional foods replace Native American bodies as the subject of scientific
discourses, the discussion shifts from unhealthy Native American bodies to the
legitimacy of Native epistemologies and the importance of sovereignty. Examples of this
paradigmatic shift can be seen in food-related publications such as cookbooks and
nutritional curricula developed by health facilities or communities. In a survey of
publications on California Indian food, Jacknis (2006) observes a recent resurgence of
literature about Native food that has its origin within Native communities. In contrast to
prior archaeological and historic publications about California Indian food that originated
in academic contexts, Jacknis characterizes these newer publications as culinary, rather
than nutritional, since they deal with the ways in which food is prepared and served. The
culinary focus described by Jacknis is an important mechanism for linking Native food to
other aspects of culture. However, there is also a persistent nutritional theme, in many of
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these publications, that illustrates a decolonizing use of scientific discourses. The
publications and programs of Native California communities turn the analytic focus from
Native American bodies to food, as well as strategically deploy food-based scientific
discourses to reinforce the authenticity and validity of Native epistemologies. Such
publications and programs include the nutritional education programs of the Sacramento
Native American Healthcare Center (SNAHC), the CRIHB, recipe publications in the
journal News from Native California, an interview with the Hutu Anape Cultural
Foundation Chairperson Rick Adams and the cookbook Seaweed, Salmon, and
Manzanita Cider: A California Indian Feast (Dubin and Tolley 2008).
FRAMING NATIVE FOOD WITH SCIENTIFIC DISCOURSE
Discourses of Native food are frequently framed by a nutritional evaluation aimed
at validating the importance of Native food as healthy and stressing the unhealthy nature
of Western foods. In contrast to syndemic discourses, there is no silence on what is
unhealthy or how unhealthy food and activities came to be normative within Native
communities. Science is used to validate the authenticity of Native food as healthy, then
thoroughly repudiated for its failure to recognize sugary and processed foods as
unhealthy when Native epistemologies had identified healthy foods and lifestyles far in
advance of any contact with European or Euro-American civilizations (R. Adams 2011;
Dubin and Tolley 2008). Once a text establishes that traditional foods are characterized as
healthy, then Native epistemologies that identify these foods are, by extension, noted as
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having been superior to scientific discourses in identifying healthy foods and lifestyles far
in advance of western concepts of nutrition and health.
The cookbook Seaweed, Salmon and Manzanita Cider (Dubin and Tolley 2008) is
organized around seven types of food common to Native California: fish; shellfish and
seaweed; meat; vegetables; berries, fruits and flowers; nuts and seeds; and acorns. In each
section, recipes, gathering techniques, family stories and nutritional values for these food
types are discussed. While loose geographic themes cluster around the different types of
food, there is a cohesive cultural narrative that serves to unify California Native Cuisine
as a larger epistemology of family connections and ancestral knowledge.
In the essay When Meat Came from Animals, Richard Bugbee
(Payoomkawichum) compares the nutritional and cultural value of game meat to that of
pre-packaged grocery store meat to argue for the wisdom of Native meat:
Long ago, food was medicine to maintain the body. Food was nourishing,
not harmful. Food provided all the nutrients needed by the body; it was not
loaded with carcinogens and chemical preservatives. People ate healthy
food, mostly lean wild meat and staple plant foods like acorns, mesquite,
pine nuts and agave. [Bugbee 2008:32]
In her recipe for “Chia Gruel,” Diana Caudell (Luiseno) constructs a similar
healthy-unhealthy dichotomy, comparing a chia trail mix to alternatives like candy,
coffee or soda. Caudell describes the recipe as passed on to her by master basket weaver
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Abe Sanchez and reminisces about preparing chia gruel for elders and for dancers. The
recipe integrates contemporary kitchen equipment into the food preparation process.
However the food itself, those who eat the food, and the settings in which the food is
eaten are all uniquely representative of Native California (Caudell 2008:94). Throughout
the cookbook, Native food is described as healthy, frequently in contrast to Western
processed foods and dietary preferences that are characterized, as illustrated in the
Bugbee passage, as actively harmful by leading to obesity, cancer or failing to provide a
full range of nutritional value.
In another essay, Debra Utacia Krol (Salinan/Esselen) reiterates this theme,
saying, “My mom, Mary Larson Bishop, and grandfather, Ed Bracisco, regularly hunted
for our tables. I grew up on venison, rabbit, quail, and dove; I think that’s why, up to
now, our family hasn’t suffered so badly from the diabetes epidemic ravaging Indian
Country” (Krol 2008:36). From wood rats to shellfish to marrow to ground animal bones
(calcium), Native meat is praised as nourishing and nutritional. By describing Native
food as healthy and nutritious, based on traditional preference for lean meats or the use of
calcium from ground bones, Native foods are imbued with biomedical authenticity. This
authenticity then extends to the cultural knowledge and holistic world view that produces
such food.
Bugbee establishes a dichotomous hierarchy between Native and Western,
processed food. The former is legitimized based on its nutritional properties while the
latter is delegitimized as lacking them. By extension, the cultural practices and
relationships that surround the acquisition of healthy, traditional food are also
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legitimized. Traditional rabbit hunts, nets, clothing and family relationships are described
as part of obtaining these traditional, healthy foods. Scientific authority is in this way
displaced from the discursive space of the Native American body to the discursive space
of food. This both undermines the scientific “logic” of the Native American body as the
natural object of research and highlights the common ground that authentic Native
American epistemologies share with Western science. By shifting the lens and gaze of
science from the Native American body to Native food, science as a process and realm of
knowledge that privileges one set of cultural values over another still privileges
hierarchical values, but has been inverted so that Native American cultural practices and
systems of land use are implicitly foregrounded as both pre-dating and conforming to
scientifically-legitimized values embedded in Native food.
This Native nutrition is thus a deeper nutrition that encompasses a cultural
cohesion absent from a biomedically-articulated concept of nutrition,28 but one that
parallels and accommodates its discursive knowledge about the significance of food.
Bugbee’s concluding paragraph captures this deeper idea of Native nutrition in
opposition to the non-holistic and alienated milieu that characterizes Western food
production and consumption:
Growing up, I always knew where animal meat came from. While
28
Ironically the extended mechanism of biopower, discussed in the previous chapter, that utilizes
biomedical discourses of nutrition to engage with community and educational structures in identity
discourses is beginning to develop the social cohesion contained within these ancestral Native discourses.
However, such syndemic cultural cohesion is singularly and uniformly asserted by sovereign power in the
form of hegemonic discourses of whiteness rather than the social cohesion practiced by Native individuals
to assert traditional identity.
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teaching at the Museum of Man, I noticed that the children associated
meat with the cellophane and Styrofoam packaging in the supermarket,
not the actual animal. Maybe we are getting too far away from giving
thanks for the animals and plants that nourish us, as they are no longer
recognizable. [Bugbee 2008:33]
This final paragraph illustrates how scientific discourses are ultimately rejected as
inadequate once they have been used to demonstrate the health and nutritional value of
Native food, and by extension the authenticity of the indigenous epistemologies that
produce them. Western dietary food habits and values are not only unhealthy, but reduce
social cohesion by distancing communities from the sources of their own sustenance. By
this same logic, a return to traditional Native foods effects not only physical health, but
social health and cohesion. It is this focus on food, rather than American Indian bodies,
that enables Native discourses to prioritize the importance of indigenous knowledge as a
preferred alternative to unhealthy alien foods and epistemologies. Like the syndemic
discourses of traditional health discussed in the previous chapter, Native food discourses
authenticate Native epistemologies and the communities who support them as inherently
healthy. However, unlike the syndemic discourses, which implicitly define “out of
balance” individuals as not Native American, these Native food discourses reject Western
food and epistemologies as explicitly unhealthy.
In Bugbee’s and Caudell’s narratives, scientific theories of nutrition create
hierarchies of “good” and “bad” food. These hierarchies have the potential to disrupt the
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dying Indian narrative described in Chapter Two. Food that had once been described as
too difficult to obtain, inferior in taste, and therefore inevitably discarded in favor of
Western food (Cook 1941), has become revitalized. A “dying” food has become a
healthy, “living” food, while Western food previously adopted for its cheapness and
flavor (Cook 1941) has been resituated in the “dying” food category for both its adverse
health effects and its polarity from life, as Bugbee notes in his observation about children
associating meat with plastic packaging and containers rather than living animals and
natural environments. In addition to the unnatural and unhealthy categorization of
Western food, Native relationships are reinvested with value as critical to the production
of Native food. Bugbee’s lament over lost relationships with animals and with plants
echoes the major theme of his essay, which both recalls his own childhood experiences of
hunting with his family and calls for the inter-generational reproduction of those
relationships. These relationships are embodied in the food restrictions surrounding meat,
the way that families and communities hunted, and the wide varieties of meat available.
Rick Adams, Chairperson of the Hutu Anape Cultural Foundation, also notes the
inability of western systems of knowledge to comprehend more complex ideas about
health:
MM: If I can ask, have you had any personal experience with diabetes?
RA. All Indians do. It's just that most of them are in a situation where they
just allow a professional or someone else to educate them. So it's always
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one slanted way and it's unfortunate, but it doesn't change until the medical
society finds that we're losing a lot of Indians, then we're definitely doing
something wrong. For quite a while they were pushing that pyramid, all
these different foods that produce sugar. They were just pushing it and
pushing it. They eat very little meat. A lot of these things that produce
sugar and then their bodies aren't adjusting to that. One key that is still not
addressed. They somewhat recognize it but it's not really addressed, is that
the human body, if it's dealing with issues of, whatever the situation,
whatever diet that they're on, if they eat very little of it, their body responds
well. The body was not meant to overload itself and eat five to ten times as
it should. They sometimes recognize that people that are overweight have
diabetes.
RA: And then they how correlate that. It's like the scientists who were
talking about frogs. They said that we want to find out why this frog can
jump four feet so they put him there and they measure it out and they yell
at him: "Jump!" So the frog jumps four feet and they say: "frog with four
feet jumps four feet." So they surgically remove one of his limbs and then
they yell at him: "Jump!" And then he jumps three feet, and they say "frog
with three legs jumps three feet." And they just keep going through and
surgically removing this frog’s four legs until they got down to the last one
and they removed it and they said: "Jump," and the frog just sat there, and
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then they yelled: "Jump!" again, and so they wrote: "ah, we have a
conclusion, when you remove legs from frog, frog becomes deaf. And it's
proven right here, we have facts!”
RA: There's a lot of different information out there. It's just how they apply
it and how they use their information. Unfortunately you can't measure
everything. It helps with Native Americans because we have traditional
practices that were instilled in us and we have phrases like “food: if it's not
medicine it's poison.” One or the other. So if you're eating it's either
making you feel good or it's making you feel bad. If it's not good for you
it's poison. It's simple. They go all the way back to dietary traditional
practices. [R. Adams 2011]
Adams’ story demonstrates a recognition of the highly structured and frequently
unnatural way that data is produced using the scientific method. It also demonstrates how
absurd scientific epistemology can be when applied as a filter for judging or producing all
forms of knowledge. The casual violence performed on the subject (the frog) is
particularly disturbing given how frequently Native American bodies are used as the
subject of scientific studies about diseases. This story highlights the violence and
absurdity associated with much of the scientific research surrounding diabetes in Native
communities. The violence of biomedical testing, the extraction of blood and other
biological samples, and the regulation of the diet and exercise of the study participants is
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treated as necessary scientific testing. Similarly Adams’ observation that correlation is
frequently confused with causation serves to highlight an enduring theme: research on
Native American bodies, whether related to tuberculosis, diabetes or some other disease
invokes a faulty logic that correlates Native American identity with the cause of
disproportionate epidemiologies.
While scientific evidence can be used to demonstrate the nutritional value of
Native foods, biomedical discourses often fail to do so. If scientific discourses are to be
used in a decolonizing way, it should be done with great care since these same discourses
remain as persistent mechanisms of structural violence. For example, Patrick Renick
(Pomo) describes how he went to University of California, Berkeley, to obtain a
nutritional breakdown of acorns so that doctors and nurses at a hospital would permit him
to bring acorn mush to sick elders (Dubin and Tolley 2008). In a similar vein, Kimberly
Stevenot (Northern Sierra Mewuk) reminds us that:
Acorn is high in protein and contains almost every essential vitamin. We
know this because we had to have it analyzed before the doctors at Oak
Knoll Naval
Hospital would let my grandmother eat it….They were
amazed at its nutritional
values. We were told that a person could
survive on acorn soup and water. As if
we weren’t aware of this
already. [Stevenot 2008:103]
While the Adams, Bugbee, Caudell, Krol, Renick and Stevenot examples illustrate how
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scientific discourses can be used to demonstrate the validity of Native food and dietary
knowledge, this is only necessary because the dominant biomedical discourse requires
Native forms of knowledge to demonstrate compliance with biomedical epistemology,
wherein health is broken down into nutritional components. The cultural components of
health that are inherent in these native epistemologies are not acknowledged by
biomedical science. As these examples demonstrate, it is still scientific evidence, rather
than traditional knowledge, that is used to validate the nutritional superiority of Native
foods. Indeed, it is only with the advent of such chronic ills as diabetes, cancer and
cardiovascular diseases that biomedicine has recognized the need to incorporate a broader
vision of health that extends beyond the physical body. As in Chapter Three, scientific
monitoring and experimentation with syndemic approaches in Native communities forms
the basis for new scientific narratives about healthy lifestyles. Nonetheless, the
production of health can be so divorced from Native values and communities that there is
literally no space in the narrative structure to recognize or reinforce pre-existing Native
systems of knowledge about food and health.
Given that current biomedical discourses were also produced by the same cultures
in which diabetes became a chronic disease with significant prevalence, it seems bitterly
ironic and counter-intuitive to realize that societies not afflicted with significant levels of
diabetes prior to European contact now find it necessary to use the scientific
epistemology favored by biomedical discourses to demonstrate the nutritional value of
their traditional dietary habits and Native foods. As the Adams, Stevenot and Renick
examples illustrate, biomedical discourses found in hospitals or many other clinical
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settings do not acknowledge the nutritional value of traditional foods until it is presented
to them as “data,” a service that these hospitals do not provide. In this way, scientific
discourses function as mechanisms of structural violence, reproducing Western forms of
knowledge by requiring that equivalent, but alternative forms of knowledge conform to
scientific standards, much in the same way that syndemic discourses of traditional health
conform to scientific standards. This not only undermines Native knowledge, it also
places the burden of creating scientific data on the individual or society. Rick Adams
explains the nature of this burden in relation to his own experiences with healthcare:
MM: I guess my question there was, traditionally the medical community has not
always done a very good job of addressing diseases in Native communities, as
you outlined yourself. It seems like there has been more of a push back in Native
communities to reshape the medical community into something that does, but it
sounds like your experience has been that it's more practical to just circumvent the
medical community entirely for that?
RA: Many times a Native organization will begin with that type of thinking, but
after dealing with all of the issues they capitulate just so they can keep the
funding source going, because in Indian community the key is the funding source.
Because if you can't get the funding, then you can't keep the staff, which means
that you can't keep the clinic open. So in a small circular way, there is a door that
will spin open when they can do something traditional that will benefit the people,
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but they can only spin through that revolving door and get right back on track of
dealing with how western medicine operates or the contingency to get grants,
proposals, you know all these other entities that they can get money from have to
be dealt with in their fashion, not in our fashion. We have a whole idea, you've
never heard of it and you'll never really see it work unless we do it. And there's
nobody else doing it. Ninety percent chance they're not going to even listen to
you. And it doesn't address the need for drugs. So then you're eliminating another
group. It starts with good intentions, but you know every single clinic runs into
that.
RA: You know I really admire the Natives that are still pursuing the constant
battle to balance their clinic's health issues through traditional knowledge and
practical western medicine. If the ailment is of extreme nature, then it only
behooves us to utilize the western practices, surgery. Sometimes we lean too
much where we're most comfortable and it's the people that suffer. Traditional
practices now in tribal clinics are, there is a process where first it goes through the
nurses and then the doctors and then maybe a couple of the doctors, and then as a
sideline, the patient has to acknowledge the desire to investigate alternative
healing.
What kind of alternative healing does that clinic offer? “Well we offer
some Chinese, some this, some massage, some chiropractics. Some, oh and there's
a native person that will come through periodically.”
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In that sense, everybody is categorized as alternative healers, but it's not
addressing a traditional practice that the natives are very familiar with. And so
they get this huge list and it's really hard to know which one to pick. And then the
one traditional doctor, what does that mean? And then they have to describe:
“well he's a Native American from your . . .” and then, “well, what does he do?”
is the next thing, and then he says: “well, I don't know.”
For example we had people that would come in to the doctor's office after
being worked on. And they would say that “you have this wrong with you, there's
an infection. But you have no fever, and we're not sure.”
The only thing that throws the physician off is there's no fever. It's because
it's a traditional art that's going on that they don't identify with. It's by the
traditional doctor. That is alleviating the infection, it's just that traditional
doctoring is very slow. It's non-traumatic. You know some of it. some of it is.
And non-invasive. There's very little pain. Well some of them. Like I said, some
of them are very painful. Stone doctoring is extremely painful.
MM: It sounds painful.
RA: Yeah, it is. It's very painful. But it really gets the job done. I think that some
people out there are just now starting to acquire basic understanding in working
with some of the traditional arts. For a patient to come in and say I have this
infection and I keep hearing the same thing from doctors, you know, we recognize
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it but we're not sure why there's no fever. And it's not that the traditional arts are
killing the fever. It's just that they're slowly working on the infection, the bacteria
that's growing, keeping the need for the fever down. And I just heard that, you
know I hear that quite often. The last time that I heard it was just this week from a
little child who had an ear infection. And the only reason that they knew she had
an ear infection was that she kept rubbing the ear and it was all sore. But when
they checked her, she never had a fever. And then sometimes it would kind of go
away, but traditional practice has to be, you have to make it a practice. So, that's a
hard thing to develop cultural practices. The return of cultural practices is difficult
because modern medicine is, give you a shot and you're out the door.
Adams’ example illustrates the ways in which Native forms of knowledge and health are
required to demonstrate scientific validity in order to be incorporated into publicallyfunded health programs. It is not only the requirement to conform, but the labor and
effort required to transform these epistemologies into scientifically valid forms of
knowledge that continues to insult and do violence to Native values and epistemologies.
By insisting that Native knowledge conform to the deductive logic of biomedicine,
traditional authority and sovereignty is challenged at both epistemic and material levels.
GENDER, KINSHIP AND COMMUNITY
Although male foci are noticeably absent from syndemic discourses, they are
common in Native discourses, where male voices are part of an integrated social system.
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In Seaweed, Salmon and Manzanita Cider, the cultural discourse of food includes male
gender roles (Bugbee 2008 32-33; Wilson 2008:47). These gender roles are not any more
prominent than female gender roles, age cohorts or other roles, but they are noticeably
present and function to describe social and kinship relations with other men, relationships
with other members of the community, relationships with food and nature, and the
transition to adulthood.
As a symbol, Native food contains the potential for nurturing relationships
between children and adults and also provides the opportunity for children to transition to
adulthood. In the Bugbee essay, boys participate in rabbit hunts with men (2008:32-33).
As boys become older, they use larger sticks to hunt rabbits, demonstrating that they have
transitioned to adulthood. In Darryl Babe Wilson’s (Itami’Is/Aw’te) essay on deer, we
learn he was taught by his father how to hunt responsibly by selecting an older deer and
ritually acknowledging the sacrifice of the deer and of nature. This training translates into
responsible behavior as “it’jati’wa (a genuine man)” (2008:47), and it is through his
father’s guidance during the deer hunt that Wilson begins the process of becoming a man.
Debra Krol’s description of the venison prepared from meat hunted by her mother and
grandmother, which she attributes to her family’s being spared from the diabetes
epidemic, also illustrates the mirroring of healthy food, healthy people and healthy family
and cultural relationships (Krol 2008:36).
Native food contains the potential for responsible adult behavior, such as the
sharing of food, consumption of appropriate amounts of food and proper interaction with
nature. The Bugbee essay on meat mentions differential food restrictions on men (no
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meat before ceremonies) and women (monthly restrictions on meat) or requirements that
men provide meat to elders as examples of how meat was consumed. In this way,
traditional nutrition contributes to social cohesion and the reproduction of ancestral ways
of being at the same time that it guides people on the appropriate ways to consume food
in appropriate proportions and quantities. This social cohesion includes the ability of
individuals to procure and consume food in a way that is not only healthy, but reinforces
their relationships with youth and elders by providing food or learning how to obtain
food. It also reinforces their relationship with the environment, by reiterating responsible
ways to hunt and gather food.
Debra Utacia Krol’s (Salinan/Esselen) essay on hunting (Krol 2008:36) mirrors
the cultural relationships and epistemology described by Bugbee (2008). Krol describes
the extended family relationships involved in hunting for and drying meat, a meat that in
turn sustains the health of her family. As with Bugbee’s remembrance of a more idyllic
past, Krol asserts that while growing up she ate home-grown vegetable, beans, tortillas,
rice, acorns and game meat rather than processed beef. Krol tells the story of her
mother’s hunting experience with a male hunting partner and his son. She also talks about
her father and grandfather’s meat preparation techniques in contrast to her own
daughter’s meat preparation techniques. In this way, the cohesive narrative of food
gathering, hunting, and preparation is one of health and family.
SOVEREIGNTY
While syndemic discourses emphasize the importance of healthy food and
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lifestyles, Native discourses go one step further to emphasize the importance of
sovereignty, so that traditional foods can be procured and traditional lifestyles can be
practiced. If, as Cook (1941) predicts, dietary change depends on the increased
availability of a new diet, then increased tribal sovereignty is critical to a successful
return to traditional foods. Throughout the pages of the Dubin and Tolley text, the ability
to fish, hunt or gather Native foods is constantly being negotiated. In the introduction to
the cookbook, Margaret Dubin and Sara-Larus Tolley observe that:
State fish and game laws regulate what kinds of animals can be “taken,”
and when and how; this can result in charges of poaching and other
misdemeanors for hunters and fishermen who don’t follow the rules. In
2000, Dale Noel and John “Geno” Lucich, both Maidu, were arrested by a
fish and game warden for using handmade wooden spears to catch salmon
in the Feather River south of Oroville. State law prohibits the use of nets,
traps, or spears on the river, and neither man had obtained a special
permit. The following year Lucich obtained special permits for more than
fifteen tribal fishermen, and once again set up camp at the river and used
his handmade spears to catch salmon (it is much harder than it looks).
[Dubin and Tolley 2008:xvi]
In Dubin and Tolley’s example, sovereignty is first contested, then asserted through the
ability to practice traditional fishing. Because of this focus on food, sovereignty in the
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form of access to Native landscapes is a key component of these Native discourses that is
entirely absent from syndemic identity discourses.
THRIFTY GENES
Occasionally thrifty gene theory emerges within Native discourses, often to
support the importance of tribal sovereignty. By the logic of the thrifty gene theory, since
diabetes susceptibility exists at the biological level, then there is a biological imperative
for sovereignty. While social scientists are critical of the thrifty gene theory, discourses
within Native American communities range from neutrality to acceptance. The earlier
Fixico quote (see Chapter Two) suggests a defeated acknowledgement of the inability of
Native peoples and institutions to manage their own health care. However, Native
discourses on thrifty gene theory are often accompanied by a push for tribal land rights, a
return to traditional diet and activity, and other rights. Native discourses co-opt the
biomedical thrifty gene theory to provide legitimacy and urgency to arguments for
sovereignty. In this way, the thrifty gene theory as a hegemonic discourse has been
appropriated and subverted; instead of perpetuating epidemiological disparities, it is used
to call for dramatic social changes to address the socio-economic causes of
epidemiological disparities.
One such example of this discursive resistance can be found in programs and
articles written by Lorelei DeCora, a Winnebago nurse, academic and activist. In an
article on diabetes, DeCora observes that:
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Recent research has confirmed what scientists have called the “thrifty gene
theory.”… Today, the thrifty genes work against them [Native
Americans]. With a constant supply of food, even poor quality food, their
bodies store every calorie as though preparing for famine. Because they
don’t exercise as their ancestors did, they become obese very easily.
Obesity reinforced by a lack of exercise creates a welcome environment
for diabetes. [De Cora 2001:13]
De Cora uses the thrifty gene theory to argue for a return to traditional modes of activity
and exercise. Elsewhere in the article, De Cora also not only argues for a return to
traditional diet, but recites a narrative that uses the space of diabetes to describe the
removal of Native Americans from their land and traditional food sources, which were
then replaced by sedentary government housing and sugar and fat laden food rations. In
this narrative, the long history of Native Americans as subjects is readily apparent, but by
making these invisible socioeconomic explanations for diabetes visible within a thrifty
gene theory discourse, a racialized and reductionist discourse is deftly retooled to Native
ends to argue the need for social justice and land rights.
Similarly, diabetes specialist Helen Maldonado (2011), developer and director of
the Healthy Traditions diabetes program at the Sonoma County Indian Health Project,
describes four major factors as the cause for disparities in diabetes rates, with genetics
and epigenetics lumped together as the first. Much like DeCora, Maldonado argues for a
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return to traditional ways of dealing with wellness and culturally relevant care models as
a way to combat this “genetic predisposition.”
Just as the thrifty gene theory is rooted in historical ideas of biological identity
and disease susceptibility, the use of such a hegemonic discourse as a space for resistance
has historical parallels. For example, the inter-Tribal networks that led to the Red Power
and American Indian Movements (AIM) in the 1960s and 1970s were made possible by
the forced removal of Native American children from their homes to western boarding
schools for the purpose of assimilation into western culture (Castaneda 2006; Fixico
2000; Nagel 1997). While removing children from their homes and cultures was an act of
cultural violence, it allowed previously isolated groups to form pan-Indian boarding
school age cohorts and fostered the development of a shared historical consciousness and
identity that was critical to their political condemnation of federal assimilationist policy.
Similarly, the thrifty gene theory, while positioning Native Americans as the unhealthy
other, also provides a space in which Native peoples can use scientific legitimacy to
argue for sovereignty and legitimacy of Native epistemologies. Similarly the syndemic
and pan-Indian discourses of traditional health discussed in Chapter 3 also provide a
space of discursive resistance to structurally violent biomedical discourses and
institutions.
From a theoretical standpoint, the discursive space created by indigenous reappropriation of the thrifty gene theory has many similarities to the discursive space of
the refugee as discussed by Hannah Arendt and elaborated by Agamben in his discussion
of bare life (1995). The concept of bare life is a discursive space wherein the individual
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experiences (and resists) biopolitical regulation by the state; the thrifty gene theory
creates a similar discursive space through which hegemonic discourses of the state are
twisted, but the legitimacy of these discourses is retained as a mechanism for resistance.
The space of identity in Native discourses, and to a limited extent, in syndemic discourses
parallels that of the refugee, or bare life, in that it creates “a land where the spaces of
states will have been perforated and topologically deformed” (Agamben 1995:114-119).
CONCLUSION
The strategic use of scientific discourses outside of biomedicine illustrates how a
normally colonizing discourse can be subverted to reinforce Native sovereignty and
authority. This chapter has focused on the Native food discourses of California Indians.
The same emergences of Native food discourses can be seen throughought Native
communities in the United States. In the southwest, the Tohono O’odham Community
Action nonprofit pushes for a return to traditional food and operates a 100-acre farm on
which it grows traditional dietary staples such as beans, squash, corn and melons
(Denogean 2008). The Native academic Devon Mihesuah (2005, 2009) has written
extensively on the development of both Native and traditional food systems.
Native food discourses address identity more tangentially than syndemic
traditional discourses by focusing primarily on food and secondarily on identity as it is
expressed and enacted through the gathering, preparation and consumption of food. The
narrative shift from identity to food broadens the ability of these Native discourses to
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address social disparities through access to food sources and recognition of Native
epistemologies by healthcare institutions. This ability to directly, rather than indirectly,
address structural violence distinguishes Native discourses from the syndemic traditional
discourses of Chapter Three.
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Chapter 5
CONCLUSION: DIABETES AND DIALECTICISM
Diabetes is the newest manifestation of a persistent and epidemic health disparity
with deep roots in equally persistent conflations of biological heritage with social
identity. However with the emergence of syndemic community based diabetes prevention
programs and revitalization of Native cuisine and culture, diabetes has also become
emblematic of the cultural, economic and political possibilities embedded in the in the
idea of healthy Native communities. The differential deployment of scientific and
traditional discourses of identity and health illustrates the dialectic potential of the current
diabetes epidemic to emerge as a productive site of resistance to historic and
contemporary biopolitical mechanisms of structural violence.
A unifying element of indigenous experience has been a shared set of interactions
with nation-states, often in the form of appropriation of lands, erasures and denials of
identity and populations characterized by chronically ill mental and physical health
(Niezen 2003). Native Americans have suffered the effect of Western illnesses
disproportionately since contact with Western cultures. Part of the reason for this
disproportionate epidemiology is the structure of Western health care, which has
historically masked social problems as biological problems and diverted resources to the
study of biological problems rather than addressing the etiology of the disproportionate
epidemiology of these diseases. The experience of diabetes is an indigenous
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phenomenon, just as the experience and perpetuation of socio-economic inequalities via
Western health-care mechanisms is an indigenous phenomenon (Baer et al. 2003; Niezen
2003).
SYNDEMICS: COMPLEMENTARY SCIENTIFIC AND TRADITIONAL
DISCOURSES
The scientific and traditional discourses discussed in Chapter Three share a focus
on food and exercise that reflects a growing shift away from strictly biological ideas of
health to syndemic bio-cultural notions of well-being. These discourses are problematic
in that historically, colonizing scientific discourses have been uncritically integrated into
traditional discourses of identity for consumption at Tribal schools, community centers
and health care clinics. While biomedical discourses have historically dealt with Native
American identity in terms of blood quantum, genetics and disease susceptibility, the
translation and integration of scientific theory as sympathetic to traditional conceptions of
indigenous cultural identity is unique to the contemporary diabetes epidemic.
Unfortunately, this approach has the potential to broaden the structural violence inherent
in biomedical healthcare systems from individual Native American bodies to Native
American culture and society, thus amplifying, rather than ameliorating the colonizing
effects of biomedical healthcare systems.
The continued use of IHS funds for tracking medical data that is often made
available for subsequent biomedical research; the funding of both biological and
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syndemic research programs in Native American communities; and the continued silence
of syndemic programs on the historic violence all indicate the persistence of colonizing
applications of scientific discourse from American Indian health to American Indian
health research. Native American identity in syndemic discourses represents a hybrid
space in which traditional identity is renewed and expanded to include scientific concepts
as reinforcing ancestral practices and worldviews as fundamental sources of
contemporary Native American identity. At the same time, scientific epistemology is also
used to evaluate and buttress the authority embodied in indigenous knowledge, as seen
through the concepts of balance developed in the DETS curriculum.
However, scientific discourses can be used in decolonizing ways. The
participation of many Tribal leaders, educators, elders and communities in producing the
curricula examined here, as well as the increased involvement of Native communities in
practicing and applying science (rather than being the subject of science), suggests that
the new syndemic discourse may represent a decolonizing use of science, despite the
inherent liabilities associated with the reproduction of colonizing scientific discourses.
While syndemic approaches frequently include discursive space for Native
knowledge, as the structure of the DETS curriculum’s concept of balance illustrates,
when Native knowledge is interpreted through the lens of pan-Indian traditional and
scientific epistemologies, the epistemological structure of community-specific Native
knowledge is not included in these syndemic engagements with identity. This
phenomenon was seen in the way that Native students were encouraged to fit their own
community’s knowledge of health into the concept of balance or the way that Native
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doctoring techniques are evaluated using biomedical standards (R. Adams 2011; NIH et
al. N.d.b). However, the frontier space that is created by the introduction of syndemic
diabetes prevention programs is also a site of resistance and decolonization, as seen in the
appropriation of hospital spaces for Native use and the inclusion of Native voices in
scientific studies. It is likely that additional sites of resistance would be revealed through
further examination of the dialog between Native institutions and biomedical institutions
that co-develop these curricula and programs or through observation of the presentation
and consumption of these curricula and programs by Native communities.
DIVERGENT SYNDEMIC AND NATIVE DISCOURSES
While scientific discourses may be used to reinforce the authenticity of
traditional Native American identity in the pan-Indian syndemic discourses discussed in
Chapter Three, they present a different type of barrier to Native discourses and
epistemologies (Chapter Four). The requirement to conform to scientific biomedical
epistemologies frequently acts as a barrier to introducing Native health discourses into
government health programs at the local level.
Like syndemic discourses, Native discourses frequently use scientific narratives
of health and nutrition to demonstrate the value of Native foods and activities. However,
unlike syndemic discourses, which are silent on the historic violence of scientific
discourses, Native discourses then criticize scientific discourses for (1) not identifying the
validity of Native epistemologies until recently and (2) continuing to act as a barrier to
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the use of Native epistemologies in a healthcare setting (as seen in the difficulties
implementing Native health education at clinics or bringing acorn mush to elders at
hospitals). Rather than staying silent on the source of the current epidemiological
disparities (which is the trend in syndemic discourses) in Native communities, these
Native discourses explicitly cite Western culture, including Western food and lifestyles as
the source of these disparities.
AVENUES FOR FUTURE ANALYSIS
As this thesis has demonstrated, American Indian and Native identity is being renegotiated around the locus of health as a function of the current diabetes epidemic. The
expansion of biomedical discourses into community spaces, indigenous epistemologies
and identity may represent the development of another mechanism of colonization and
structural violence that reinforces hegemonic discourses of whiteness. As such, the
development and deployment of these community-based programs should be the subject
of additional critical analysis, particularly since these programs are intended to serve as
models for similar programs in other communities that experience epidemiological
disparities. Another question for future analysis is whether the inclusion of traditional
healthcare knowledge and incorporation of Native healthcare professionals trained in
syndemic discourses may begin to erode the biomedical barriers to Native health
practices in hospital settings described in Chapter Four and whether closer examination
of the production and consumption of these syndemic discourses and approaches may
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illuminate additional sites and mechanisms of resistance.
In conclusion, this thesis has demonstrated the emergence of a frontier space
surrounding the diabetes epidemic in American Indian communities in which both
colonizing and decolonizing discourses assert indigenous identity. At a local level, these
discourses are often characterized by a revitalization and renewal of Native culture and
epistemology as seen in the discussion of Native cuisine in California. At the same time,
historically colonizing biomedical discourses have developed additional, biopolitical
mechanisms that target and exploit American Indian community and cultural identity.
Resistance to these colonizing biopolitical discourses has emerged at multiple levels;
although the epistemological structure of biomedicine persists in the assimilation, rather
than the recognition, of Native epistemologies the structures and mechanisms of
biomedicine are frequently appropriated for strategic use by Native individuals or
organizations.
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Appendix A
INTERVIEW QUESTIONS
1) Please describe your role as a health care worker with Native American
communities, specifically with regards to diabetes.
2) How would you describe diabetes within Native American communities?
3) Are you familiar with any diabetes prevention programs that serve Native
American communities?
4) Are you familiar with any nutrition or fitness programs that serve Native
American communities? Do you consider these programs to be an aspect of
diabetes prevention?
5) How do these programs prevent diabetes within Native American communities
(i.e., do they focus on food, exercise, social relationships, etc.)
6) Please describe the organization of these programs and their meetings. Who is
encouraged to attend these programs? Where and when do they generally meet?
7) What is your opinion of these programs?
8) Do you see a distinction between healthy food and traditional food?
9) Do you see a distinction between exercise and traditional activities?
10) Have you ever heard of the thrifty gene theory? If so, what do you think of it?
11) Do you have any questions or comments that you would like to add?
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Appendix B
INTERVIEW WITH RICK ADAMS, HUTU ANAPE CULTURAL FOUNDATION
CHAIRPERSON29
Interview Date: 2/25/2011
Interviewer: Melodi McAdams (MM)
Interview Location: Roseville Maidu Activity Center; Roseville, California
Interview Notes: Mr. Adams (RA) reviewed the interview questionnaire before the
recording started, and a copy of the questionnaire was available for reference during the
interview.
MM: You were talking about diabetes and healthcare and your experiences with that?
RA: Well, it's certainly an issue, it's interwoven in now the conscious mind of just about
all native communities because there's no boundary. It hasn't, as long as you stay within
California, it is just running rampant.
MM: Yes.
RA: And it was. You know I can really see it becoming something that if it's not
29
The copyright for this interview transcription belongs to Mr. Adams.
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addressed, it just could be one of the biggest killers in Indian Country, simply because
there's no traditional way of addressing it other than simple practices. I can't even say it in
Nisenan anymore, but they have certain phrases, if you eat that type of food, it's going to
kill you. So there were addresses to the influx of western diets in reflection towards
cultural views. The elders were saying that if you eat that type of food you're going to
die, but not realizing the extent. It was very very true. But they chose to see it through
traditional eyes and just responding in traditional ways, they saw it as very unhealthy
food. Those people that spoke of it, all we have is the quotes. We don't have anything
exact, what variety they were talking about, what foods in specific, but they chose to be
adamant about that to where they were publicly quoted as saying that the western food is
going to kill you.
MM: So those were Nisenan elders?
RA: Yes.
MM: How recently was that?
RA: 1800s. 1830s. No not 1830s. It would be 1860s to 1890s.
MM: Do you think that there's much of a push locally to step away from those sorts of
unhealthy foods? From western food?
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RA: You know that's a hard question because there is a push, but they're not looking at
how Natives view the food issue. It's so convoluted with educated or commercial
information and it's hard to trust the health environment, the health practitioner because
they're getting information from who knows where?
MM: The USDA?
RA: Yes and we've shown, well the government has shown us just how much they really
honestly try to deal with human beings. They don't. It's just a business. As long as there's
big business out there that is flashing money in whatever perk that they can. A
government is going to respond in kind. They're going to lean more toward getting
something for themselves. But you know every government has been that way.
Governments weren't made to take care of people. They were made to control people.
MM: If I can ask, have you had any personal experience with diabetes?
RA. All Indians do. It's just that most of them are in a situation where they just allow a
professional or someone else to educate them. So it's always one slanted way and it's
unfortunate, but it doesn't change until the medical society finds that we're losing a lot of
Indians, then we're definitely doing something wrong. For quite a while they were
pushing that pyramid, all these different foods that produce sugar. They were just pushing
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it and pushing it. They eat very little meat. A lot of these things that produce sugar and
then their bodies aren't adjusting to that. One key that is still not addressed. They
somewhat recognize it but it's not really addressed, is that the human body, if it's dealing
with issues of, whatever the situation, whatever diet that they're on, if they eat very little
of it, their body responds well. The body was not meant to overload itself and eat five to
ten times as it should. They sometimes recognize that people that are overweight have
diabetes.
RA: And then they how correlate that. It's like the scientists who were talking about
frogs. They said that we want to find out why this frog can jump four feet so they put him
there and they measure it out and they yell at him: "Jump!" So the frog jumps four feet
and they say: "frog with four feet jumps four feet." So they surgically remove one of his
limbs and then they yell at him: "Jump!" And then he jumps three feet, and they say "frog
with three legs jumps three feet." And they just keep going through and surgically
removing this frog’s four legs until they got down to the last one and they removed it and
they said: "Jump," and the frog just sat there, and then they yelled: "Jump!" again, and so
they wrote: "ah, we have a conclusion, when you remove legs from frog, frog becomes
deaf. And it's proven right here, we have facts!”
RA: There's a lot of different information out there. It's just how they apply it and how
they use their information. Unfortunately you can't measure everything. It helps with
Native Americans because we have traditional practices that were instilled in us and we
have phrases like “food: if it's not medicine it's poison.” One or the other. So if you're
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eating it's either making you feel good or it's making you feel bad. If it's not good for you
it's poison. It's simple. They go all the way back to dietary traditional practices.
Hawaiians, if they went back to Poi, then they get their sugar level controlled. It doesn't
work if they're eating too much, it just seems to... And then they just move that person
out of the ….[chuckle] Hey you know we're not going to deal with that, we're just going
to look at these others. It's unfortunate.
RA: Diet I know is a very big key, it's a strong indicator of other problems. But if you're
eating food that is constantly breaking down and becoming sugar in you, it's just common
sense to realize that I can eat one meal and I can work all day and that food is still
breaking down, becoming sugar. And as you get older it's even worse. So young kids are
doing that right now. As they get older they will be in
extreme danger and there's no way to alert people of that because you're dealing with
outside entities. You're dealing with commercial. You're dealing with people convincing
you that some of these sugars are really ok and good for you.
MM: Like with fruit juices that are almost 100% sugar?
RA: And I feel bad about high fructose corn syrup that is just one step away from being a
molecule, from being a fuel. Car fuel. It's no wonder it's messing up your liver. If big
business can convince the AMA or whoever they had to go through, Congress, that this
sugar is not poisoning anybody because it doesn't kill you, it simply destroys the liver.
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And the liver keeps getting bigger and bigger and bigger. These people that are struggling
are now carrying around a liver that's five, six times bigger than it should be. You know
you have to be careful with your liver, you can't mess around like that. No wonder
things get out of balance.
RA: Just about every reservation has diabetes issues, it's just how they're addressed. A lot
of the elders refuse to go to the doctor. Because all the doctor does, or the nurse, even
though she has a heart of gold, all she does is give them bad news.
“I can't seem to control it, why should I let her upset me, or him upset me?”
Because all they ever do is give you bad news. It's not really a catch-22 but it's just how
they're being taught. I doubt if there's some way to circumvent that. Because the medical
society has its own specific way of dealing with things. I think every medical school now
is being paid by drug companies. They're the ones that pay for all that. Because when that
student graduates, their specialty is being able to apply drugs to an ailment. And big
business knows that if they ever create something to cure something, then they're going to
go out of business. It behooves them not to use a curing compound.
MM: It's a for-profit healthcare system.
RA: I don't really see that there's any way to circumvent that with a higher type of
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knowledge. To be able to step within the environment, if it's not what they want to be
heard or dispersed then you're in violation. A lot of doctors are sensitive about being
sued. They can suggest that traditional diet can help, but their hands are actually tied. So
when your primary caregiver is himself a slave to the problem, he may not be eating it,
but he has to apply all of his techniques and knowledge. Well let’s just face it, it's
antiquated.
[Break]
RA: My experience is, within a short period of time, broad. I was chairperson for my
clinic for quite a few years and working with staff in developing the bylaws and protocols
that have to be established. You become very familiar with the practices. And being the
health board chairman, everybody in the department sees you as the primary patient,
because if you get sick, how does it look towards them?
MM: Doctor, heal thyself.?
RA: So they really spend a lot of time with those that are on the executive board. Then I
became the vice-chair for all of the rural Indian clinics in California. Which was just like,
from swimming in a pool to jumping in the ocean. Then you have to deal with doctors
from all over, your own staff doctors and then dealing with your health board. And then
assimilating the new information that was either altered in some way or really had a new
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idea. There's not a lot of new ideas out there that are being pursued. And so you have all
that, a lot of reading, a lot of trying to find out the answers that will address, because of
your own tribe, specifically towards their health needs. So you're always looking for a
different view on diabetes and this and that. That's your job as far as an executive board
member, to return with profitable ideas, whether they're new or an extension of old
practices and you're just making a renewed effort to get them accepted.
RA: So it's just a constant, not battle, but certainly. It's almost unaffordable, you just can't
keep doing it. You're using up your time. You’re using up all these different issues. For
myself I just saw that it wasn't coming from where it should be. You can get so much
information down to ground level, but good information or bad information is no
information if it's not able to be used. So it doesn't really matter if you're pushing good or
bad if the individuals are not believers in it and if you can't convince the tribal individual
that's suffering from diabetes. The benefits, even if they're hard. I'm not talking about
taking shots and all these things. A whole lifestyle change, acknowledging that part of the
problem is the inability to balance a diet, not talking about the food, but just the
consumption. And then getting into some of the more impractical foods that were not
available to us through our generations. And now this extreme change in food, and then
on top of that the altered food and then on top of that the increase, just the tremendous
increase in sugar, sugar in everything. So it's almost like it's a planned attack to kill
human beings, but there's no winner in it. Unless it's another country, and they're just
growing sugar cane and shipping it over to us, saying “thank you very much”.
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MM: That would be a long term strategy.
RA: I hate to think that it's just that life has been devalued because of big business' greed
and economic plan to get so much money by getting us addicted and feeding us the
cheapest, terrible food that has no nutritional value, yet everybody is hooked on it.
MM: It sounds like, working as a chair for your clinic and later with the rural health
board, you identified things like lifestyle change and diet shifts, but the medical vehicle
just wasn't effective?
RA: No. They acknowledged who I was, but I couldn't get any progress to do anything
until after I retired. After I retired, then I became, not a spokesperson, but developing
healthy practices, through my non-profit and through my business. Diabetes is a small
corner of the issue. It's a small corner. It's teaching young boys. It's doing all of these
things. But applying a building block for that program is dietary consciousness, I guess.
MM: So for your non-profit, how long have you been doing that?
RA: I don't know. Four, five, six years? It's been real slow because I've always felt that if
you push too hard and get it out there without the support then it's spinning out of control.
People don't view it as something profitable. So we move real slow. Now my tribe is
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actually stepping in and becoming more sensitive to my viewpoints and they're wanting
to hire me to be a part of all their practices now. Cultural practices, not political practices.
That's not the way to go. If you really want to help people, sometimes you need a foot in
the politics, but it's like a mire, a quagmire. It will pull you in. And if it does then you
become imbalanced and you can't help the people on the land. So you have to be able to
somehow stick your foot in every once in a while, twirl it around to show that you
participate but then you have to pull it back out. And then you've got to rinse yourself
clean. You can't be politically attached to one idea or entity or power figure. Which
allows a slow migration of ideas, not to be dispersed among all the paid people, we're
going to do this and we're going to be paid to do this. As soon as that happens, then it
becomes an animal of profit. Ours is a non-profit. It doesn't have the ability to make
anybody rich, but it does have the ability to stay clean from political powers which
will manipulate. We can give you a couple thousand dollars, maybe ten thousand dollars
if you use our product or supporting the idea of you know, whatever. And so we've struck
some hard shoals at times, trying to get this non-profit, as a vehicle, to move forward. But
it is. I enjoy it very much and I know that it has a lot of potential.
MM: You mentioned that you were teaching children about diet. Is your main focus
towards children, or is it all members?
RA: It's all members. Because children are affected the most, but children are the least in
control of their destiny. They really aren't. A lot of times we start with the young
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mothers. And then parents. If we can get the mother to see. Then the next person that's
going to tear that down is the father. And then the next person that's going to tear that
down is peer pressure. We use the mother bonding program to sort of substantiate our
view that you can heal through a natural way rather than always having to depend on a
physician to give you a drug to heal you. You can avoid all that by certain traditional
practices. And you don't just jump into them. So using the mother-bonding syndrome. Or
not syndrome. Hah, maybe in the medical society. They used to view it that way! I
remember when nursing was the worst thing that you could give a baby. And they would
describe it as milk didn't have enough protein, didn't have enough this. And it took 40
years, oh 30 I guess. But they were doing that in the 40s too I think. It's big push was
business, because they were selling that product and they were convincing doctors.
Mother's milk isn't good enough. Don't think about those generations before just listen to
us, it's not good enough. And doctors would listen to that, because that's how they were
getting paid. They were getting paid by all of these different organizations that supported
their schooling.
MM: It's amazing how much interaction pharmaceutical companies have with the health
profession. Do you have any kind of relationship with local health clinics?
RA: I do. Every once in a while one will contact me. SNAHC, Sacramento Native
American Healthcare Center. And let’s see, Chapa-De, I'm supposedly on their list of
traditional doctors. But you see, traditional medicine is different. It's truly like a buffalo
130
in a herd of cattle. It's obvious that it's not going to eat the same way. It's not going to eat
the same food. It's very cumbersome to move through a wave of western thinking
because the ones that are uncomfortable. Sometimes you can feel pretty free about
saying, "oh that's so wonderful, it's natural" and all that stuff, but When it comes down to
it, it doesn't fit in to being protected, as far as being insured. There's no way of
documenting how, a lot of different practices. So it remains a strange, exotic creature in a
land of its birth.
MM: I was curious because I know that SNAHC has some diabetes and diet awareness
programs that it runs. Do you work with any of their outreach program?
RA: Not at this time, you know they recognize it. Because the individual that gets the
grant, or the individual that is being paid has specific rules that they have to go by. And
so I realize that, being from my background. I don't even push it, it gets to be pretty
uncomfortable. But overall, time sometimes can open up all sorts of avenues that were
not there at the beginning. Sometimes forcing something is probably the least practical
way. Even though you know that it's for the better and you have an idea. Sometimes you
just have to wait it out. And Indians are famous for that. We'll wait it out so long that
we'll die. You know that's a cultural practice.
MM: For the thrifty gene theory question, the thrifty gene theory is something a lot like
your frog example where the medical community believes that higher rates of diabetes in
131
native communities might be because of genes. It has led to a lot of genetic research in
native communities, maybe at the expense of a more community based approach. In some
ways it has not been helpful to native communities. Sometimes though you see it sort of
turned around, and people will use the thrifty gene theory as an argument for providing a
greater variety of diet, or that sort of thing. Since it seems like it has had a resurgence in
popularity lately, I have been asking people about it.
RA: It's something I've heard for a long long time. I agree with the practical thinking
behind it. But it's very limiting because I don't think that it's just Native Americans. I
think we are affected because of different environments. We changed from one cultural
environment to the other. It's not like you can build up an immunity to sugar. But I do see
a cultural practice that extends far longer than ours of eating processed sugar. Where over
here, Natives didn't have that, their processed sugar was a few berries and a few bulbs.
We have a holiday where that's what we have is these bulbs. You bake them and they
turn into candy. It's called the big bulb season. And that's it, the rest of the time there's
not a lot of sugar. Or if you get really sick, there are times when they would apply pine
sap that has sugar, to certain medicines. And you only eat that when you're sick. That
sounds funny, you only eat the sugar when you're sick. But they would apply it with
some really strong medicine that goes with it. What's the phrase, a spoonful of sugar. The
Natives were practicing that.
MM: I guess my question there was, traditionally the medical community has not always
132
done a very good job of addressing diseases in Native communities, as you outlined
yourself. It seems like there has been more of a push back in Native communities to
reshape the medical community into something that does, but it sounds like your
experience has been that it's more practical to just circumvent the medical community
entirely for that?
RA: Many times a Native organization will begin with that type of thinking, but after
dealing with all of the issues they capitulate just so they can keep the funding source
going, because in Indian community the key is the funding source. Because if you can't
get the funding, then you can't keep the staff, which means that you can't keep the clinic
open. So in a small circular way, there is a door that will spin open when they can do
something traditional that will benefit the people, but they can only spin through that
revolving door and get right back on track of dealing with how western medicine operates
or the contingency to get grants, proposals, you know all these other entities that they can
get money from have to be dealt with in their fashion, not in our fashion. We have a
whole idea, you've never heard of it and you'll never really see it work unless we do it.
And there's nobody else doing it. Ninety percent chance they're not going to even listen to
you. And it doesn't address the need for drugs. So then you're eliminating another group.
It starts with good intentions, but you know every single clinic runs into that.
RA: You know I really admire the Natives that are still pursuing the constant battle to
balance their clinic's health issues through traditional knowledge and practical western
133
medicine. If the ailment is of extreme nature, then it only behooves us to utilize the
western practices, surgery. Sometimes we lean too much where we're most comfortable
and it's the people that suffer. Traditional practices now in tribal clinics are, there is a
process where first it goes through the nurses and then the doctors and then maybe a
couple of the doctors, and then as a sideline, the patient has to acknowledge the desire to
investigate alternative healing.
What kind of alternative healing does that clinic offer? “Well we offer some
Chinese, some this, some massage, some chiropractics. Some, oh and there's a native
person that will come through periodically.”
In that sense, everybody is categorized as alternative healers, but it's not
addressing a traditional practice that the natives are very familiar with. And so they get
this huge list and it's really hard to know which one to pick. And then the one traditional
doctor, what does that mean? And then they have to describe: “well he's a Native
American from your . . .” and then, “well, what does he do?” is the next thing, and then
he says: “well, I don't know.”
For example we had people that would come in to the doctor's office after being
worked on. And they would say that “you have this wrong with you, there's an infection.
But you have no fever, and we're not sure.”
The only thing that throws the physician off is there's no fever. It's because it's a
traditional art that's going on that they don't identify with. It's by the traditional doctor.
That is alleviating the infection, it's just that traditional doctoring is very slow. It's nontraumatic. You know some of it. some of it is. And non-invasive. There's very little pain.
134
Well some of them. Like I said, some of them are very painful. Stone doctoring is
extremely painful.
MM: It sounds painful.
RA: Yeah, it is. It's very painful. But it really gets the job done. I think that some people
out there are just now starting to acquire basic understanding in working with some of the
traditional arts. For a patient to come in and say I have this infection and I keep hearing
the same thing from doctors, you know, we recognize it but we're not sure why there's no
fever. And it's not that the traditional arts are killing the fever. It's just that they're slowly
working on the infection, the bacteria that's growing, keeping the need for the fever
down. And I just heard that, you know I hear that quite often. The last time that I heard it
was just this week from a little child who had an ear infection. And the only reason that
they knew she had an ear infection was that she kept rubbing the ear and it was all sore.
But when they checked her, she never had a fever. And then sometimes it would kind of
go away, but traditional practice has to be, you have to make it a practice. So, that's a
hard thing to develop cultural practices. The return of cultural practices is difficult
because modern medicine is, give you a shot and you're out the door.
MM: Were there any other topics about diabetes that you wanted to discuss?
RA: I didn't want to discuss any of this! [laughs]
135
MM: I'm sorry.
RA: No no, you wanted to get it done.
[break]
RA: It's very sad for me to see. You know, some of the nurse practitioners are bringing
back some understanding, and they're implementing these practices whether they're
accepted within their, quote "position" or what. And I don't want to mention names, but
you know I think that it's a start, you know, they're not viewing things all in one basket,
so to speak.
RA: I love how they suggested that you drink a lot of water. How logical is that? Instead
of sodas. They used to say, well you need to switch over to diet soda. It's sort of like,
“I've seen nothing but wrecks in California when you're in the right lane, well you should
switch to the left lane.”
MM: Yes, the logic often seems a little strange. Sorry, that didn't come out right.
RA: No, I understand. I was in Safeway last night, pushing my cart around. That's where
I hear all the gossip. Safeway is a big store and I saw twelve family tribal members. Two
of them are in line, and then they start telling these stories. One of them gets in line and
136
says:
“this is my prescription.”
So the pharmacist says, "are you sure?"
So they say, “what do you mean?”
And he says, well “I've been hearing a lot of bad things about this drug, and your
doctor just?"
And the patient says, "well I guess I'm not getting it."
But that was the best that the prescription could be. You know they never could get
anything to replace it, an alternative.
MM: Some of the prescriptions are like that.
RA: It's a quandary, because the doctor is not necessarily at fault. He is given certain
tools, and part of those tools are drugs. That's all you do all day long, is prescribe drugs.
That is your job. None of these drugs are good for you. It's just that big business knows
what to send out there for this ailment. And they have their scientists figure it out. It's not
the doctor that figured it out. The doctor may have the biggest heart and compassion for
his patient. But if he's part of the problem..., and it's not to reduce my respect towards
doctors, or their qualifications. It has nothing to do with that. it's that our dependency on
something that is so artificial. There isn't anything that we go through that hasn't been
addressed somewhere in a traditional way as far as healing for effect. And you know, it
just has to be addressed and somehow find a place within the medical society's
137
acceptance.
RA: My biggest complaint is that they were wanting to do herbs and they tried to teach
herbal. And to me that's an insult. When I do an herbal class, I take the herbal book and I
say “now we're going to work with herbs, is anybody familiar with this book?” It doesn't
really matter which book. And they say “yes” and I say “good” then I throw it in a
garbage can. When you're taking a remedy out of an herbal book, that's the same thing as
going to somebody's house, getting into their medicine cabinet and taking their drugs.
That remedy was made for a specific person. Who knows, maybe 100, 200 years ago. For
some reason, they've given the misnomer, this is an herb, it does this. This is an herb, it
does the same thing, and you put them together it works better.
MM: That one to one logic.
RA: Yeah. It's like trying to make an explosive bomb so you add oxygen and then you
add hydrogen, well lets double that, and instead you get water. The whole thinking
behind it lacks a real true presence of mind.
MM: Nobody thought about the whole thing together.
RA: To limit an herb's characteristics by saying, well this herb does this, and it kind of
does that. Herbs generally have ten to twenty different properties that can be accessed. It's
138
not as dangerous, because herbs are very natural and the body can deal with it. But you're
not getting what you' think you're getting by letting somebody make you a remedy that
really has no idea what is wrong with you. So I'm not a staunch supporter of looking on
the internet, or somebody coming up and saying,
"what do you have, an herb for not getting pregnant?"
And I go, "well yes, but what are your issues?"
And then you find out that they don't ovulate right. Or whatever. And then they have
different issues. You have to be careful because you can exacerbate the issue by applying
the wrong herbs to a certain condition.
MM: I tell my husband that. Some people are very attached to the idea of herbs or
vitamins and one function, without it doing anything else.
RA: Men sometimes fall into that because we put as little time as possible into that. Men
are just the opposite of women. You know what, a lot of women don't realize it, but
sometimes their complaining almost makes it look like they want a lesbian relationship.
It's not really that strange to view. They want somebody who's sensitive. And I
understand that because men these days are programmed to be educated, not to respond
in a nurturing way. And that's part of my class, working with the boys, not the girls, but
the boys to become leaders. It goes from 8 to 20, 30, 40. There are 40 year old men that
are utilizing the classes.
139
MM: I know some 40 year old men that could use those classes.
RA: A lot may need it, but it's only for those that are really wanting to take advantage of
it, because I'm too old to be playing around. There's no gratification except for
acceptance and belief. If they believe in it, then it's enough for me to put the time in. The
classes are wonderful, sometimes that's how we learn. Not by the artificial way of
learning through books and letters and computers. Because you really don't know that
person, and that person is not telling you something that intrinsically is your issue, that
you're looking for. Usually it's a development of thought that he's trying to transfer over.
Teaching, human-to-human is really the ideal way, not the only way, but as far a natural
setting. Teaching human to human. That way they see the individual and what you're
doing has a lot to do with their belief. So if you're complaining about them being healthy,
and then you're outside smoking and drinking then they know just how much to believe
you. Traditional practices are very difficult because it's not just the doctoring, it's not just
what kind of practice that you are sharing, but it's the inherent character of the individual
that's bringing it, because if you're not respected in your own community, then you
shouldn't be out in the public doing it. So the best place to find traditional healers is
within the environment of the tribe. Because nobody knows you better than your tribe,
hopefully. Sometimes you get tribes that have gathered and unified to develop a
constitution that will be accepted by the government and they're fairly well strangers to
each other. But then you have families that have known each other since they were little.
Those are the ones that, if used in a traditional way can apply their understanding and be
140
able to choose their leaders in a much much wiser way than seeing their picture on a
billboard somewhere and saying oh he looks cute, he looks honest, I like his voice.
Instead they're saying I remember when he was a little kid. It's different in Indian country
where there is a longevity of the history, you know where generations have been around
each other.
MM: My thesis deals with a current theory in the anthropological community that is
called syndemics, where if you treat something at the community level like that, then you
also treat a lot of other diseases within the community and just a lot of other things that
may be problematic. The community as a whole, becomes healthier.
RA: It's hard to find that open door, for systemic, not cure, but for a systemic way of
healing. For me the best way is to utilize whatever skills I have and apply them in a more
traditional way of teaching. That's what the non-profit does as far as teaching young men.
They don't walk away with just a little bit. My family has been pushing, pushing, pushing
for me to do this for years and years, you know this, I just. I do the weddings and then I
do the funerals. And you know little things here and there. You know, it's hard saying
goodbye to them when there wasn't anything that you did to help their life when they
were living. And so this is my big drive.
MM: It sounds big.
141
RA: I wish that someone would help too, but you know it's not at that point yet. It will be.
I'm trying to get young men to step forward and accept that responsibility.
MM: It sounds like you're developing something that will have a lasting impact.
RA: We'll see.
142
Appendix C
LIST OF ACRONYMS
A2BP1
Ataxin-2 Binding Protein
ABOR
Arizona Board of Regents
ACAD10
Acyl-Coenzyme A Dehydrogenase family, member 10
ADA
American Diabetes Association
AIM
American Indian Movements
ASK1
Apoptosis Signal Regulating Kinase 1
ASU
Arizona State University
BMI
Body Mass Index
CMA
Critical Medical Anthropology
CNDP1
Carnosine Dipeptidase 1
CDC
Centers for Disease Control and Prevention
CPHS
Committee for the Protection of Human Subjects
CRIHB
California Rural Indian Health Board
DETS
Diabetes Education in Tribal Schools
DFG
Deutsche Forschungsgemeinschaft
DPP
Diabetes Prevention Program
ELMO1
Engulfment and cell motility protein 1
HLA-DRB1
Human Leukocyte Antigen DR Beta 1
143
IHS
Indian Health Services
MBL2
Mannan-binding lectin 2
NAGPRA
Native American Graves Protection and Repatriation Act
NIDDK
National Institute of Diabetes and Digestive and Kidney Diseases
NIDDM
Non-Insulin Dependent Diabetes Mellitus
NIH
National Institutes of Health
PIONEER
European Community Integrated Project Grant
RNA
Ribonucleic Acid
SDPI
Special Diabetes Program for Indians
SIM1
Single-minded Homolog 1
SNAHC
Sacramento Native American Health Center
SNP
Single Nucleotide Polymorphism
SUIPHI
Sacramento Urban Indian Health Care Project
144
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