UBRARY

Michigan State
University

 

 

 

PLACE IN RETURN BOX to remove this checkout from your record.
TO AVOID FINES return on or before date due.
MAY BE RECALLED with earlier due date if requested.

 

DATE DUE DATE DUE DATE DUE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2/05 p:/ClRC/DaleDue.indd-p.1

POWER AND COMMUNITY IN AIDS PUBLIC POLICY
By

Liisa Marie Randall

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Anthropology

2006

 

ABSTRACT
POWER AND COMMUNITY IN AIDS PUBLIC POLICY
By
Liisa Marie Randall
In 1993, the US Centers for Disease Control and Prevention (CDC)
implemented a national level policy initiative for HIV/AIDS prevention. The
initiative, referred to as “community planning”, was intended to ensure the
implementation of effective HIV prevention programming through direct
involvement in resource allocation decisions of HN—infected persons and
representatives of at risk communities. This dissertation examines how federal
HIV/AIDS policy constructs community, how participants in HN prevention
community planning themselves understand and articulate community, and the
extent to which there is congruence betvmen the two perspectives. In this
dissertation, I also examine the linkage between community and social identity,
specifically as it relates to the exercise of power. In doing so, I explore
knowledge as it relates to the construction and articulation of social identity (i.e.,
community). More precisely, I suggest that community is constructed through
deployment of particular types of knowledge which are rooted in personal
experience with HIV/AIDS. In particular, I argue that knowledge is deployed
strategically in an effort to gain access to, or to exercise power as exemplified by
the fluidity in community identity expressed by participants in the community
planning initiative.

 

There is a rich body of anthropological research on HIV/AIDS which has
enhanced our understanding of the specific practices which contribute to disease
transmission, the social construction of risk. and the social and structural factors
which influence the epidemic. The research on which this dissertation is based
represents a departure from previous anthropological research in that it is
concerned explicitly with policy as the field of analysis. In adopting a critical
perspective, I illustrate that anthmpological research should play an essential
role in documenting how policy is interpreted. In doing so, ethnography can make
transparent the social, political and economic premises underIying policy and

can, simultaneously, reveal the effects of policy, whether or not intentional.

COPY'ight by
LIISA MARIE RANDALL
2006

ACKNOWLEDGMENTS

This dissertation was possible only through the assistance, guidance and
support of many colleagues, friends and family. I owe a great debt to all those
involved in community planning for allowing me the opportunity to make this
important endeavor the subject of my research. Their commitment and
enthusiasm was boundless and inspiring.

I would like to thank Judy Pugh, my dissertation committee chair and
advisor, for her guidance and support spanning many years. I am grateful to
John Hinnant and Robert McKinley for challenging and encouraging me over the
course of my graduate career. I owe a special thanks to Rita Gallin who agreed
to serve on my committee only days before her retirement and who provided me
with extensive comments and suggestions on multiple drafts of this dissertation.
Nancy Smith of the Department of Anthropology was an invaluable resource and
Was exceptionally helpful to me in navigating through the requirements and
processes of the department and the graduate school.

I am deeply indebted to Randy Pope, my mentor and friend, for his
confidence in me and for providing me with exceptional opportunities for
professional growth. Julie Scofield, David Holtgrave and Maria Lapinski provided
invaluable expertise, perspective on this research. Their intellectual support,
friendship and humor continue to sustain me.

Finally, I am deeply grateful for the love, patience and encouragement of
my mother, Sheila. She never doubted my ability to complete this work and
helped me to keep my perspective throughout the long process.

TABLE OF CONTENTS

Chapter 1: INTRODUCTION

Rationale and Purpose ................................ 1
HNIAIDS and Anthropological Research .................. 5
Review Of the Extant Literature .......................... 9
Describing and Contextualizing Risk ................ 10
Sexuality and Identity ........................... 17
Political Economy Of HIV/AIDS .................... 21
Anthropology and HIV/AIDS Policy ................. 28
Critical Policy Research ......................... 30
Organization Of the Dissertation ......................... 34
Chapter 2: THEORE'nCAI. CONSIDERATIONS
Introduction .................................. 37
Contemporary Notions of Community .................... 38
Community In Public Health Discourse ................... 39
Anthropology and Community .......................... 41
Identity and Power .................................. 48
Foucault’s Knowledge/Power and Subjectivity .............. 50
Critical Interpretive Anthropology ........................ 55
Summary .................................. 58
Chapter 3: METHODS
Introduction .................................. 60
Policy as a Field Of Study .............................. 80
SituatingtheResearcher..................... ......... 61
Data Collection .................................. 65
Secondary Data Sources .............................. 74
Informed Consent and Confidentiality .................... 76
Summary .................................. 77
Chapter 4: SOCIAL AND HISTORICAL CONTEXT FOR COMMUNITY PLANNING
Introduction .................................. 78
Epidemiological Overview ............................. 78
The Emerging Epidemic ............................... 80
Early Policy Response ................................ 82
The Federal Response .......................... 84
Michigan’s Response ........................... 87
Policy Reform .................................. 92
Emergence of Community in AIDS Policy ................. 96
Summary .................................. 99

Chapter 5: THE RESEARCH SETTING
Introduction ................................. 100

The Federal Level - The Centers for Disease Control ....... 100

The State Level - Michigan ........................... 103
The Community Planning Process ...................... 106
Summary ................................. 124
Chapter 6: HIV RISK AND COMMUNITY
Introduction ................................. 125
HIV Risk ................................. 125
Risk and Community ................................ 130
Discussion ............................... 138
Summary ................................. 143
Chapter 7: LOCALLY DEFINING COMMUNITY
Introduction ................................. 144
Local Perspectives on Community Defined in Federal Policy . 144
Local Construction of Community ...................... 149
Community Rooted in HIV Infection Status .......... 150
Community and Race/Ethnicity ................... 152
Community and Sexual Identity ................... 158
Community Rooted In Personal Experience ......... 161
The AIDS Community .......................... 167
Authenticity ................................. 173
Discussion ................................. 179
Summary ................................. 187
Chapter 8: CONCLUSIONS
Introduction ................................. 189
Summary Of Research Findings ........................ 189
Contributions Of the Dissertation Research ............... 194
Limitations ................................. 203
Recommendations for Future Research ................. 205
APPENDICES
A: Interview Guide ................................. 206
8: Organizational Chart for the Division
Of HIV/AIDS Prevention ............................ 208
C: Michigan HIV Prevention Planning Regions ............ 209
BIBUOGRAPHY ................................. 21 1

vii

CHAPTER 1
INTRODUCTION
Rationale and Purpose
The HIV/AIDS epidemic is driven by a complex interaction Of biological,
behavioral, social, political and economic forces. Neither a cure nor a vaccine is
likely to be available in the near future. Prevention Of transmission is our best
and most effective option for stemming the epidemic. Thus, implementation of,

and support for, effective HIV prevention efforts is essential.

In late 1993, a national-level policy initiative was implemented by the US
Centers for Disease Control and Prevention (CDC). The purpose of this
initiative, known as ‘community planning,” was to ensure the development and
implementation of sound HIV prevention programming. The explicit assumption
Of community planning is that substantive and direct involvement Of affected
community members in the decision-making processes Of local, state and the
federal government will result in HIV prevention programs with increased
effectiveness when compared with prevention programs which preceded this

initiative.

Direct engagement of affected communities in government decision-
making was seen, by federal policy makers, as essential to the development of
sound HIV prevention policies and programs. It was argued that community
members possessed particular and unique “expertise” essential to the
development of effective HIV prevention efforts. Participation of community

representatives was intended to ensure that community values, nouns and

1

attitudes were considered in formulating prevention strategies.

Community planning is a cornerstone the US. government's HIV
prevention efforts. This initiative informs all Of the nation’s publicly-supported HIV
prevention efforts. Program and resource decisions, at all levels of government,
are informed by it. A successful prevention response at the local, state or
national level is greatly dependent on the success of the community planning
initiative. If community planning is successful in fulfilling its mission, it will ensure
that prevention efforts at the local, state and national levels are appropriately
targeted, based on sound scientific theory, and are culturally and linguistically
competent, as well as responsive tO community values and norms. The relative
effectiveness of HIV prevention efforts is closely tied to the success of the

community planning initiative.

Because the community planning initiative serves as the compass for
prevention in the US, it is essential that this initiative be examined Closely to
assess the extent to which it is successful in achieving its mission, the specific
barriers and facilitators which mediate its success, and the social, cultural and

political factors which shape its implementation.

While anthropologists have contributed substantially to research on
HNIAIDS since the beginning of the effort, relatively limited attention has been
given to AIDS public policy, especially in the United States. I am not aware Of
any research, at least in the published literature. by anthropologists that

specifically addresses the community planning initiative. This dissertation

attempts to fill this gap.

In this dissertation, I examine the community planning initiative, as policy,
with a focus on the ways in which the notion Of community is both constructed
and articulated in the context of this policy. More importantly, I eXplore how the
concept Of community is applied, and to what purpose(s).

I examined community planning over approximately a two-year period
beginning in early 1996. Given that this dissertation concerns policy, the “field” Of
study was somewhat unconventional, requiring examination and analysis of
policy and legislative documents in addition to more traditional ethnographic
methods of interviews and participant-Observation. The community planning
initiative is the result of federal public policy, but it is a policy which is executed
by state and city health departrnents. The community planning process in

Michigan was used to illustrate implementation Of this policy.

Key research questions evolved and were refined over the course Of
research. I began simply enough with the problem of definitions. How is
community defined, constructed, and expressed by those participating in
community planning? TO what extent and in what ways are definitions

concordant? What meanings do people associate with community?

Relatively quickly it became evident that the notion Of community was
intimately linked with social identity. I refined my research questions to focus
more precisely on the dynamic nature of community and community as social

identity. What factors influence definitions of community? What criteria do

3

people use to construct and articulate identity? How are notions Of community
and identity linked?

Ultimately, it became clear that community is political, and that this had
important implications for community planning. Simultaneously, community
planning, as policy, had important implications for community in terms of how it is
constructed, understood and expressed. In this way, my perspective expanded
to include a focus on the politics Of community. How and to what extent does
policy shape our definitions and understanding Of community? Conversely, how
do notions of community shape (or reshape) policy? In what ways, and to what
purpose(s) is community, as social identity, used? What are the implications for

the success of this policy in achieving its goal(s)

Examination and discovery Of the ‘thick” meanings Of community were
certainly interesting to me, for their own sake. However, I found it impossible to
divorce community planning from the considerations Of history or political
economy. Community planning is very clearly a product of both, and as such,
must be situated in both an historical and political context. Also, as federal
policy implemented by state government agencies, community planning, as it
was implemented in Michigan, could not be dislocated frOm the historical and
political contexts at either the state or national levels. In this way, this
dissertation attempts tO highlight policy research as an important and legitimate
‘field' for research in medical anthropology.

l was also keenly interested in an applied approach. I wanted this work to

serve practical purposes: promoting and supporting effective HIV prevention
efforts, by guiding and informing HIV/AIDS public policy. A critical interpretive
approach was best suited to my purposes. This approach situates interpretive
analysis within an historical and political context, thereby illuminating the ways in
which cultural constructions are used in social action, as well as purposes that
such constructions serve. The critical interpretive approach provides the
foundation needed to pose workable strategies for policy development or reform.
This dissertation attempts to highlight the importance Of examining macro-level
social, historical and political forces to Obtain a deeper understanding of local

issues.

The extant anthropological literature on HIV/AIDS covers a broad range of
culture areas and issues. Anthropological research has contributed greatly to
our understanding Of HNIAIDS including the local contexts of behavior, culture-
specific practices and perceptions of risk, as well as the social construction of
HNIAIDS. AnthrOpOlogicaI research has done a good deal to highlight
particularities and unique nuances of culture that influence the epidemic. More
recently, a growing body of research addresses the political economy of

HIV/AIDS, highlighting structural influences relevant to the spread of the disease.

HIVIAIDS and Anthropological Research
In the United States and most Western nations, the theoretical models Of

behavior that dominate most health promotion and disease prevention efforts,
tend to focus on the individual, and presume more or less rational decision-

making processes with respect to health-related behaviors. Theories such as

the Health Belief Model (Becker and Joseph 1988), the Theory of Reasoned
Action (Ajzen and Fishbein 1980) and Social Learning Theory (Bandura 1977)
are, in general, predicated upon the assumption that knowledge translates into
heightened perception of risk, which then translates into behavior change. Not
surprisingly, interventions designed to prevent the transmission and/or
acquisition of HIV that are grounded in these theories tend to address the
cognitive or psychological aspects of human behavior.

The problem with these theories and resulting disease prevention/health
promotion strategies is that they neglect to adequately consider that individuals
are parts Of families, social groups, and communities. Judith Auerbach and her
colleagues (1994:88) argue that this emphasis on “rational factors and cognitive
process that shape the isolated individual’s decision-making... have obscured the
social and relational factors involved in behavior...." lndividualistic models of
disease prevention/health promotion strategies also fail to acknowledge the

social, political, economic and other structural factors that influence HIV risk.

Very early in international HIV/AIDS prevention efforts, particularly those
supported by intergovernmental agencies such as the World Health Organization
(WHO) and the United Nations Global Programme on AIDS (UNAIDS), the
ineffectiveness of interventions grounded in behavioral health theories in
international settings quickly became evident

...[O]n the basis of both research findings and of practical

experience around the world, it was becoming clear that a far more

complex set of social, structural, and cultural factors mediate the

structure of risk in every pOpulation group, and that they dynamics
Of individual psychology could never explain (or stimulate) changes

6

in sexual conduct without taking these broader issues into account
(Parker et al. 2002:5).

Research methods and intervention paradigms that accommodated the range of
complex and interrelated factors contributing to the spread of the epidemic were
needed to inform HIV prevention efforts. Anthropology and related disciplines

offered an appropriate framework.

Survey-based methodologies are heavily represented in epidemiologic
and social research conducted in response to the AIDS epidemic. Survey
research is typically designed to assess respondents’ knowledge about
transmission modes and preventive practices, attitudes about certain behaviors
associabd with transmission, or attitudes towards populations affected by
HNIAIDS (e.g., HIV-infected persons, drug users). Much of this research is also
intended to establish the frequency of behaviors among particular population
“groups” believed to be associated with increased risk for HIV transmission or
acquisition. It relies heavily on surveys and structured interviews that include
questions about the number of times that people engaged in specific sexual acts
(e.g., insertive anal sex, receptive oral sex), the number of partners with whom
they engaged in such acts, and the frequency with which protective strategies,
such as use of condoms, was employed. Surveys and interviews conducted
among drug users include questions about the type of drugs used, the methods
employed to use them, and the frequency with which they share equipment for
the preparation and use of drugs. Public health and medical authorities deem

data gleaned from these research efforts to be the most appropriate to inform
the development of specific prevention strategies (Turner, Miller, Moses 1989).

7

The findings from this type of research generally provide answers to the
primary questions of epidemiologists and health program planners - the “who,
what, how much, and how Often?" Methodological approaches which emphasize
quantitative data, however, grossly oversimplify the answers to these questions
in that they assume homogeneity Of specific sexual and drug using practices. In
his very commtent critique of current methodological approaches to sexuality as
it relates to HNIAIDS, Caceres (2000:250—251) states:

...[I]t has become evident that to ask about sexual practices using
standard biomedical terms does not adequately take into account
the enormous variety of practices placed under each label. Nor
does it allow for the possibility that anal sex, oral sex, mutual
masturbation, or any other practice can be performed in a variety Of
ways. Similar problems pertain to the measurement of secondary
practices that impact [HIV risk, including] behaviors involving:
corporal fluids (e.g., whether or not semen is deposited in
condoms, on the body, or in its cavities); the use of drugs before,
during, and after sex; and patterns of partner selection. An overly
superficial focus on sexual practices as defined by medical and
behavioral science categories, rather than as understood and
enacted by individuals concerned, will inevitably lead to naive
formulations of behavior change and to associated problems for
intervention and program development.

Ethnographic approaches can fill the gaps in knowledge resulting from

application of other methodological approaches.

Most methods employed in HNIAIDS prevention research tend to provide
unsatisfactory responses to the questions most important to informing effective
HN prevention efforts - the 'Why, where and when?” Richard Parker
(1995bz262) eloquently argues for the necessity of addressing these important
questions:

Here, in thinking about the complicated questions involved in AIDS
prevention, it is clear that not just the frequency of a given behavior

8

is important. The subjective (psychological) and inter-subjective

(social and cultural) meanings associated with it may be far more

important. The social construction of sexual excitement and desire,

ways in which sexual identities are formed and transformed, the

relations of power and domination that may shape and structure

sexual interactions, and the social/sexual networks that channel

and condition the selection of potential sexual partners may all be

salient issues that must be taken into account in developing more

effective strategies for AIDS prevention.
While Parker‘s remarks specifically address sexual risk, they can be extrapolated
to encompass all HIV-related risk, including that associated with drug use and
practice of behaviors to reduce or eliminate risk for transmission Of HIV.
Anthropological research can provide us with information and insight about the
context of all behavior. In the next section, I review the extant anthropological
literature on HIV/AIDS to illustrate the value and relevance that ethnographic

approaches have contributed to research on HNIAIDS.

Review of the Extent Anthropological Literature on HIVIAIDS

With respect to HNIAIDS, anthropological approaches have aided in
identifying a broad range of sexual and drug using practices, many not identified
or misidentified through other methodologies, and have placed them within
specific social and cultural contexts. Anthropological approaches to HIV
prevention have revealed the social and cultural meanings attached to sexual
and drug using practices. This has contributed to an enhanced understanding of
how individuals and communities construct notions of risk. AnthrOpology has
also provided reflective analyses of social and political responses to, and the
impact of, HIV/AIDS. In short, anthrOpology has expanded our awareness and
understanding of a diversity of beliefs and practices that place individuals and

communities at risk for HNIAIDS, and has demonstrated the extent to which HIV
is embedded in the social, political, and economic, as well as the cultural
experience of people. In the paragraphs that follow, I present examples from the
published literature relevant to HNIAIDS prevention that best illustrate the

important contributions that anthropology has made to this field.

Describing and Contextualizing Risk. Richard Parker's (1991) ethnographic
research conducted in Brazil suggests that multiple ideological systems, which
are often conflicting, shape sexual behavior and associated meanings. Included
among these are ‘traditional’ Latin ideals of masculinity (active and uncontrolled
sexual desire) and femininity (passive and controlled sexual desire); Christian
religious doctrine that places value on monogamy, marriage and sex for
procreation; and more indigenous erotic ideals which emphasize sensuality and
pleasure. Sex is central to a Brazilian man's notion of masculinity. Men are
perceived not to be in control of their sexual desires and are expected to be
sexually experienced. They are simultaneously expected to value women as
wives and mothers, but also to seek women actively for sex and pleasure.
Women’s sexuality, conversely is expected to be controlled and preserved for
procreation. Simultaneously, Brazilian women are expected to be

knowledgeable about sex and desiring of sex, in the context of marriage.

Vera Paiva (1995) built upon Parker’s research to demonstrate that such
ideals mediate sexual behavior and shape perception of HN-related risk. Her
research, an evaluation of a HN prevention intervention for adolescents,

demonstrates that adolescent Brazilian boys resist condom use because it

10

conflicts with their notion of masculinity and their expectation that female
partners be “virtuous.“ Open discussion of sexuality, including condom use, by
Brazilian women conflicts with cultural ideals of femininity and virtue. Her
research findings indicate that prevention interventions must specifically

acknowledge and address cultural norms in order to be effective.

In her research on street prostitution in Spain, Angie Hart (1995) focused
on the male clients of female sex workers. Her research documented that these
clients clearly understood prostitutes to be “at risk” for HIV, but that these same
clients did not see themselves as being “at risk” for HN as a consequence of
their sexual activities with prostitutes. Consequently male clients of sex workers
rarely took protective measures, such as using condoms. Hart found that in
Spain, cultural notions of masculinity are strongly associated with sexuality, that
patronizing prostitutes is a cultural norm, and that there is a strong cultural bias
for “natural sex“ (i.e., without a condom). In this context, male clients of
prostitutes manipulated beliefs about sex and HIV to enable them to continue
their behavior without modification. These men “justified" patronizing prostitutes
as “what men do”, and reduced their perceived risk by going only with “clean”

women, or women whom they “trusted.”

Patricia Symonds (1998) has conducted extensive field research related
to HIV/AIDS among the hill tribes of Thailand (see also Kammerer et al. 1995).
Her research suggests that cultural factors make the Hmong and other hill tribes
vulnerable to HIV. The Hmong are patrilineal and polygamous. A cultural
premium is placed on fertility and procreation. Since the Hmong are polygamous.

11

men may have multiple female sexual partners both for pleasure and to produce
children. Women on the other hand, are expected to have sex only for the
purpose of procreation. Therefore, Hmong women are vulnerable to HIV through
their husbands who may have many partners. This vulnerability is heightened by
Hmong men’s increasing use Of commercial sex workers. Similarly, opium is
traditionally used by the Hmong for a variety of purposes including pleasure and
medicinal uses. In the past, Hmong only smoked opium. Increasingly, heroin, a
processed form of opium is used by the Hmong, and is injected rather than
smoked, again contributing to increased vulnerability to HN.

Hansjorg Dilger (Dilger 2003) examined HIV prevention efforts among the
Luo of rural Tanzania. These efforts are, according to Dilger, based upon
Westem conceptions of AIDS and sexuality, and advocate the use of condoms,
but do not specifically discourage sex. At the same time, pre- and extra-marital
sex is not culturally normative. In examining how Luo youth describe their sexual
behavior and articulate how they understand AIDS, Dilger shows that cultural
conceptions of sexuality and gender have important impacts upon their actions.
He further illustrates that these conceptions are becoming increasingly
ambiguous, due to modernization which is shaping Luo youth’s notions of
sexuality and gender in ways which diverge from more traditional
understandings. Dilger argues that the conflict between cultural norms and HIV
prevention efforts has lead to confusion among Tanzania's rural youth rather

than encouraging adoption of behaviors to reduce the risk for HIV transmission.

Daniel Smith (2003) examines the failure of HIV prevention programs in

12

Nigeria to influence the sexual behavior of young people so as to reduce their
risk from becoming infected with HIV. In this study, Smith illustrates that young
Nigerians have a very high level of awareness of HNIAIDS, and a strong
understanding of how it is transmitted, and how transmission can be prevented.
Nevertheless, young Nigerians frequently engage in unprotected sex. Smith
examined the organization and meaning of sexual relationships; ideas about
gender relative to reproduction; the construction of AIDS as a hopeless disease;
and the importance of religion in framing young people’s decisions about sexual
behavior. Smith argues that HIV risk is conceived Of in ethical and moral terms.
In making decisions about sexual behavior (including use of condoms), Nigerian
youth consider the extent to which the behavior is moral (i.e., sexual partners are
in committed, loving relationships). Condoms are considered only for prevention
of pregnancy, rather than for prevention of disease. Condom use is therefore
seen as a threat to intimacy. The stigma of HIV/AIDS, because of its association
with death, is a barrier to open discussion of sexuality and negotiation of use of
condoms. The prevailing discourse that AIDS is a “scourge from God” due to

immoral behavior, further compounds open discussion of sexuality and risk.

Anthropology is defined, more than anything else, by its approach to
research, i.e., ethnography. Ethnography allows for the identification and
description of behaviors that increase risk for transmission or acquisition of HIV
that other research methods fail to capture fully, interpret accurately or simply
miss. Stephen Koester's (1994; 1996) work with injecting drug users (IDUs)
clearIy illustrates the value of ethnographic methods in identifying HIV risk

13

 

behaviors that other research methodologies fail to identify. Early into the
epidemic, it was well established that sharing needles and syringes for drug

injection was an effective means for transmitting HIV.

One important finding of Koester's research was that IDUS prefer not to
share needles and syringes due to a preference for sharper needles, rather than
concerns about HIV transmission, even though IDUS understood the HIV-related
risks of sharing needles and syringes. Koester Observed that sharing of cottons,
cookers and rinse water were extremely prevalent among lDUs, even when
sharing of needles and syringes was not. These “indirect sharing” practices
were influenced by drug acquisition and dividing practices. None Of these
practices had been identified through other research methods, and none had
been addressed as part of HIV prevention targeted to IDUs. Because virologic
research has demonstrated that HIV is found to remain in used cottons, cookers
and rinse water in sufficient concentration to result in infection with HIV, the
findings from Koester's research have important implications for HIV prevention

program design.

Epidemiologic research on IDUs suggested that “shooting galleries,”
locations where dnrg users congregate for the purpose of using drugs, were
associated with HN risk behavior (DesJarlais and Friedman 1990; Celentanto, et
al. 1991). EpidemiolOgists did not recognize, however, that the venues and
situations associated with injecting drug use are varied, depending upon a
number of factors such as the type of drugs being used, drug purity, cost and

availability of drugs, local law enforcement policies, availability of syringes, and

14

drug trafficking patterns.

Wayne WIebel’s (1996) ethnographic research conducted among Chicago
IDUs, was instrumental in informing HIV prevention efforts targeted to IDUs in
that city. Specifically, Weibel identified three distinct types of “shooting
galleries.“ each with a different “culture” of drug use and “rules” for acceptable
behaviors. “Cash galleries” are run like businesses and have a relatively formal
set of rules. “Taste galleries” are associated with informal social networks of
drug users, Often operating out of someone’s house or room, and requiring an
invitation. “Free galleries” are primarily found in abandoned buildings or
secluded areas in public parks. These venues are essentially free of rules and
Open to all. This research resulted in the design of HIV prevention intervention

efforts targeted to the unique culture and rules of each type of venue.

E.J. Sobo’s (1998) work among poor inner-city African Americans has
important implications for HIV prevention efforts. Sobo’s (1998:78) research
findings suggested that for most inner-city black women in the United States,
“cultural ideals make committed sexual unions with men essential for achieving
status and attaining happiness". Sobo asserts that it is romantic notions of love
combined with the social status and self-esteem associated with being in a
relationship (a cultural ideal), that motivates these women to seek relationships.
Her research also indicates that these women actively use unsafe sex as a
strategy to achieve these cultural ideals. Use of condoms denotes a lack of
sexual exclusivity and a lack of trust. In short, it signals failure in the
relationship. Sobo's research also revealed that economic self-sufficiency is a

15

cultural ideal for inner-city African American women. These women recognize
reliance on men is risky, and her research demonstrated that, in general, inner-
city African American women are relatively economically self-sufficient. In this
example, cultural meanings associated with sexuality and relationships are more

compelling than material considerations as predictors of HIV risk.

Chris Lockhart (2002) examined sexual behavior among urban “street
boys“ in Tanzania, as it relates to possible avenues of HIV transmission. In
doing so, Lockhart’s research calls into question the way that AIDS researchers
have defined and approached the phenomenon Of “survival sex”. Lockhart
examines the sexual and social networks of these boys, fl'Ieir sexual practices
and their attitudes toward and perceived risk of HIV infection. Previous (non-
anthropological) research suggested that these boys engaged in homosexual
behavior as a means of survival, i.e., they were selling themselves to men in
order to meet their basic survival needs. Lockhart’s research, however,
illustrates that the sexual behavior among street boys is far more complex.
Specifically, homosexual practices among street boys are rooted in a complex
set of behaviors and ideologies known as “kunyenga”. Life on the streets and
homosexual relationships in the context Of kunyenga helps the boys to maintain
dependence on one another. As these boys approach adulthood, the practice of
kunyenga sex (homosexual sex with other street boys) is accompanied by an
increase in heterosexual activities. Lockhart's research demonstrates that
sexual practices rooted in kunyenga represent a potential bridge for HIV

infection, both into the general population, as well as within the sexual network of

16

street boys.

Other ethnographic research has identified HIV-related attitudes, beliefs
and risk behaviors, which directly contradict findings from epidemiologic and
social research conducted by other methodologies. For example, Ralph Bolton’s
(1995) ethnographic work among gay men in Belgium revealed that anal sex
without a condom was normative. According to Bolton, this directly contradicted
the findings of a government sponsored survey Of gay men. According to Merrill
Singer (1998:14), early social research among IDUs incorrectly interpreted
needle “sharing“ as a “ritual act of social bonding among a group of individuals
who would othemise be cut Off from supportive community involvement“ (see
also GIick-Shiller 1992). These examples illustrate the value that ethnographic

research has with respect to informing HIV prevention efforts.

Sexuality and Identity. Wrth respect to HNIAIDS, social identity, particularly
sexual identity, is one area where non-anthropological research approaches
have failed to adequately and appropriately acknowledge and address issues of
relevance to the development of effective prevention programs. Epidemiologic
constructs of sexuality have tended to conflate sexual behavior and sexual
identity (Murray 1995a, Parker 1995b). Ethnographic research, however, reveals
that sexual identity can be represented as:

...including modes Of sexual being, which encompass such matters

as erotic desire, sexual orientation, sexual object choice, and

sexual drive; and sexual action, which includes such phenomena

as erotic practices and tastes, sexual sequences Of behavior, and

sexual lifestyles. Where the former impinges upon the inner world

of sexuality, the latter evokes much of what is important in the
construction of sexuality (Herdt and Boxer 2000:72).

17

Ethnographic approaches to sexuality research have expanded our
understanding of the extent to which sexuality is “core“ to social identity, the
symbolic forms associated with this and the meaning associated with specific
sexual practices in the context of social identity. For example, Gilbert Herdt's
(1981) work among the Sambia of Papua New Guinea, is illustrative of the lack
of connection between sexual identity, as a construct generally used by
epidemiologists and other social researchers, and sexual behavior. Herdt's
earlier work on the Sambia described what he termed “ritualized homosexuality,”
specifically the universal practice of same-sex relations between older and
younger, unmarried, Sambia men. Herdt argues that it is actually not appropriate
to refer to these practices as “homosexuality.“ Because “homosexuality“ does
not have cultural saliency for the Sambia, Herdt and Boxer (1995274) assert that
“...it is better to represent this symbolic type of same—sex practice as boy
inseminating rites.“ Herdt's work suggests the Sambia recognize a range of
sexual practices which have different functions, contexts and intended effects.
Same- and opposite-sex practices for the Sambia can and do serve the same

symbolic function - creating and developing strong boys.

Henriksson and Mansson (1995) argue that, in response to repression of
their sexuality in broader society, Wedish men who have sex with men have
created their own cultural meanings around sexuality and specific sexual
behaviors. In their research they illustrate that sexual interactions are mediated
by the “symbolic value“ (HenrikSson and Mansson 1995:172) or the meaning and

value that is attached to certain sexual practices and techniques, or to having

18

sex in a particular venue or setting. Negotiation of “safer sex“ (i.e., sexual
practices which reduce the risk for HIV transmission) in this context undermines
the established “rules“ of communication and disrupts or destroys the symbolic

value of sexuality.

In his research on transgendered commercial sex workers, Michael Clatts
(1995) highlights the weaknesses of non-anthropological approaches to HIV
prevention research that associate specific risk behaviors with gender identity
and sexual identity. Clatts demonstrates that sexual behaviors and perception of
risk are Often incongruous with assigned gender categories. Male to female
transgendered sex workers perceived themselves to be at relatively low risk for
HN because they associated HIV with being “gay,“ despite engaging in receptive
anal sex with male clients. Sex workers interviewed by Clatts categorized
themselves as women, rather than men. Some female to male transgendered
sex workers interviewed by Clatts perceived themselves to be at relatively low
risk for HIV because they perceived themselves as women, despite engaging in
sexual activity with men who had sex with other men.

Ethnographic work on sexual identity among Latino men who have sex
with men (Murray 1995; Parker 1995a) suggests sexual identity is more closely
associated with enactment of appropriate gender roles rather than sexual object
choice. 0f paramount importance is the distinction between “active“ (masculine)
and “passive” (feminine) which organizes both hetero- and homosexual relations.
Men may engage in same-gender sexual contact, but do not perceive
themselves, and are not perceived by others, as “homosexual“, providing that

19

they assume the active/masculine role in sex, and act as “men“ in other social
interactions. In the past two decades, a “gay“ subculture organized around
sexual object choice, such as exists in the United States, has emerged in Brazil
and other Latin American societies. Parker (19953) argues that even within this
subculture, the notions of active/passive, masculine/feminine are incorporated
into identity and inform sexual behavior. Veriano Terto’s (2000) research on HIV
and homosexual men in Brazil illustrates the nexus between HIV/AIDS and the
construction of sexual identity. His research suggests that HIV seropositivity has

emerged as a distinct social and sexual identity within Brazilian gay subcultures.

In his work with Filippino men who have sex with men, Michael Tan (1995)
found that gender and class were key factors in construction of social identity,
within the broader society, as well as in “subcultures“ of men who have sex with
men (MSM). Tan’s research also suggests a strong association between social
identity and sexual practices. “Bakla“ is a gloss word for “homosexual,“ referring
to men who are effeminate. It is strongly associated with cross-dressing and
with the lower classes. Tan argues that this definition shapes the gender identity
and sexual practices Of a certain portion Of Filippino men who have sex with
men. Specifically, men who self-identify as bakla, have sex only with men who
are “straight.“ Bakla men generally assume the female or passive role in sex,
particularly anal sex. Men who are bakla generally do not have sex with each
other as that is considered lesbianism. Bakla men and men who self-identify as
“gay“ generally do not date each other, as they are perceived to be of different

social classes, with “gay“ men representing the higher class. It Is acceptable,

20

however, for “gay“ and bakla men to engage in casual sexual relations. Tan
highlights an implied power relationship with respect to sexual relations that is
mediated by notions of both gender and class which has important implications

for HIV prevention efforts.

Bronwen Lichtenstein's (2000) research addressing homosexual behavior
among married and nominally heterosexual black men in Alabama identified
several contexts wherein these men who do not self4dentify as “gay“ (nor do
they generally acknowledge same sex sexual behavior) engaged in homosexual
behavior. Homosexual behavior was demonstrated to occur in the context of
obtaining drugs in exchange for sex and during incarceration. Homosexual
behavior was frequently denied by black men due to homophobia. The findings
from this research indicate that behavioral bisexuality among black men is not
uncommon. However, homosexual behavior among black men who are
behaviorally bisexual is generally done with secrecy and condoms are rarely
used. Thus, Lichtenstein concludes that homophobia, incarceration and

substance abuse compound and exacerbate the risk for HIV among black men.

Political Economy of HIV/AIDS. Paul Farmer (199516) admonished
anthropologists and other social scientists to “...move beyond a concept of ‘risk
groups’ towards a consideration of the interplay between human agency and the
powerful forces that constrain social life, especially those activities which
promote or retard HIV transmission.“ Macro—level political, economic, and
structural forces affect micro-level social and cultural dynamics, including those
associated with HIV risk.

21

Social analyses conducted by anthropologists have elucidated the myriad
of forms and forces that define and inform sexual and drug using behaviors, and
influence social responses to HIV/AIDS. For example, Farmer (1992) was among
the first anthropologists to construct a comprehensive political economy of AIDS,
describing the intersection Of economies, politica, gendered power relations and
culturally specific beliefs and behaviors, in fueling the growth of the epidemic in
rural Haiti. Farmer also identified culturally specific sexual and domestic
partnering arrangements that facilitated the spread of HIV into rural areas of
Haiti. He further identified culturally Specific beliefs regarding disease etiology
that mediated individuals’ understanding of and response to the disease. He
reports that his research confirmed epidemiologic research that suggested that
commercial sex work was a key mode of transmission into rural areas. He
placed these findings, however, into the context of the economic and political
instability of Haiti to demonstrate that growing poverty, gendered power relations,
and political upheaval significantly contributed to the spread of HIV in rural Haiti.
Growing poverty, particularly in rural communities, altered traditional domestic
partnering arrangements and undermined traditional gender roles, making
women more vulnerable to HIV. Poverty also forced greater migration between
urban areas and rural communities, thus contributing to the spread of HIV into
rural communities. Finally, multiple coups d’etat thwarted effective government
response to the epidemic. Farmer (1995:23) asserts that “...by combining social
analysis with ethnographically informed epidemiology, we have identified the

most significant factors determining the rate Of HIV transmission in rural Haiti.“

22

Ethnographic research conducted among hill tribes of Thailand
(Kammerer, et al. 1995; Symonds 1998) has similarly highlighted this important
interplay between politica, economy and culture. According to Kammerer and
her colleagues (1995: 68), “state and capitalist penetration is implicated in HIV
risk“ for the hill tribes of Thailand. Their research suggested that government
restrictions against opium poppy farming combined with government control of
agricultural production has undermined traditional means of livelihood for the hill
tribes and forced them into wage labor and increasing involvement in the lowland
economy. Economic and political changes have resulted in shifts in gender roles
and increasing poverty for women, causing an increase in the number of young
women from hill tribes participating in commercial sex work as a means to
support their families. Men have increasingly accepted wage labor in urban
areas, which has been accompanied by adoption of cultural norms of
“mainstream“ Thai society, including use of brothels and use of alcohol. Opium
has a variety of traditional uses among hill tribes. The decreased availability of
opium associated with government restrictions on poppy farming have forced hill
tribes to shift to heroin, a cheaper and more addictive form of opium. The
interface between these political and economic factors and indigenous cultural
values and norms related to sexuality, sexual practices and gender roles and

expectations, contributed to the spread Of HIV among the hill tribes of Thailand.

The collapse of agriculture in Lesotho and subsequent dependence on
mass labor migration into the Republic of South Africa, has significant
implications for the spread of HIV in both countries (Romero-Daza and

23

Himmelgreen1998). South Africa has established strict laws and policies
regarding labor migration. Migrant laborers from Lesotho are prohibited from
settling permanently in South Africa and women are prohibited from participating
as migrant laborers. As a result, men are away from home for extended periods
of time. Extended absence from home leads men to patronize commercial sex
workers, to establish secondary households with other women and to engage in
homosexual relationships in migrant camps. These factors increase the
likelihood for transmission of HIV to wives and girlfriends upon the men’s
mandatory return to Lesotho. Due to the structure of wage payment, Lesetho
families receive little of the income earned by men participating in migrant labor
in South Africa, creating a position of extreme economic hardship for Lesotho
women. The economic position of Lesotho women is compounded by the fact
that women have no legal status and are granted little to no decision-making
power in financial matters. Ethnographic research indicates that Lesotho women
are increasingly participating in “bonyatsi,“ frequently with men who are returning
migrant laborers. Bonyatsi refers to a traditional cultural practice wherein men
maintain several long-tenn sexual relationships with multiple women. It is
traditionally associated with post-partum sex taboos. In this case, Lesotho
women appear to be involved in bonyatsi as a strategy to avoid poverty. The
example of Lesotho underscores that “[t]he health and well-being of a population
are intrinsically related to the wider socioeconomic and political conditions under

which its members live“ (Romero-Daze and Himmelgreen 1998:185).

Ethnographic work conducted in African nations highlights gender power

24

relations as contributing to the spread of the epidemic (Obbo 1995; Rwabukwali
et al. 1994; Schoep 1995). Cultural norms regarding sexuality which emphasize
fertility and reward women for reproduction increase women’s vulnerability to
HIV. Marriage and children are often the primary way that women gain access to
social resources and prestige, and cultural norms allow and encourage men to
have multiple sexual partners. Penetrative sex with ejaculation is endowed with
cosmological significance. Cultural norms and traditions in many African
societies, then, place women in a position subordinate to men, economically,
socially, and in terms of negotiation of sexual interactions. The economic and
social instability of many African nations has contributed to the rapid spread of
the epidemic on that confinent (Schoep 1995; van der Vliet 1996). In her
remarks regarding the impact of war and political violence on AIDS in many
African nations. Vrrginia van der Vliet (1996:81) argues, “Africa has been
particularly ill-fated insofar as the onset of AIDS and a period of widespread
instability have coincided....Wars and anarchy create ideal conditions for the
transmission of HN.“ Such instability has further intensified women’s risk for HIV
by forcing women into commercial sex work or to otherwise have multiple sex
partners to provide for their families due to their lack of marketable skills and
scarcity of opportunities. Their subordinate social and economic position forces
dependence on men and undermines women’s ability to negotiate “safer sex“,

such as condom use, with their partners.

Rhodes, et al. (2005) examine production of risk among Injecting drug
users. They assert that HN risk is generally conceived of as “endogenous to

25

individuals’ cognitive decision-making and immediacy of interpersonal
relationships“ (Rhodes, et al. 2005:1027), and as such, HIV risk is within the
control Of an individual. This individualist approach to risk forces a focus on the
individual as the agent for behavior change, an approach which predominates in
cunent HIV prevention efforts. Rhodes and his colleagues describe and discuss
a wide range of social structural factors that are critical to consider relative to the
production of HIV risk among injecting dnrg users including cross-border trade;
injecting environments (e.g., shooting galleries); the role of social networks in
drug using and sharing practices; the role of macro-social change and political or
economic transition; the role of stigma and discrimination in reproducing
inequality and vulnerability; inequality linked with ethnicity, gender and sexuality,
the role of policies and laws; and the role of emergencies such as natural
disasters and armed conflict They argue that HIV risk is a product Of the
interplay between social and structural factors, and that political and economic
factors play a predominant role in producing risk. In this way, they encourage a
shift in thinking about risk as within the control of individuals. With respect to HIV
prevention efforts, Rhodes et al., emphasize that what is critically needed is

structural interventions that will influence the context in which risk is produced.

Anthropology’s important role as cultural critic regarding social responses
to HNIAIDS should be highlighted because this type of work has essential value
and relevance for public policy develOpment and reform. As an infectious
disease, HIV is democratic in the sense that it is behavior which transmits

disease and not identity, cutting across class, race, gender, age and geography.

26

Nevertheless, HIV is decidedly undemocratic as it disproportionately affects
urban populations who have competing concerns of poverty, lack access to
medical care, and who suffer from a myriad of health concerns such as low birth
weight, tuberculosis and alcoholism. HIV also disproportionately affects gay
men, drug users and racial minorities and so is very much linked with identity
(Lindenbaum 1998; Singer 1994). Shirley Lindenbaum (1998: 50) states that in
“so-called democratic epidemics....a sense of mutual vulnerability is said to
prevent communities from stigmatizing and making outcasts of the ill.“ She
asserts, however, that because HIV affects those who are already stigmatized,
and is transmitted by behaviors which are socially disapproved, AIDS is an
exceptionally stigmatizing disease. Stigmatization Of AIDS has had multiple
effects, according to Lindenbaum, including a social and political backlash
against gay communities; government control of education and public
information efforts to conform to more conservative values and norms;
fragmentation of public views about the origin and transmission of HIV; and

development of a body of knowledge necessary to inform prevention efforts.

Virginia van der Vlient (1995) argues that HIV/AIDS was constructed as a
“gay“ disease in the United States owing to the way epidemiologists categorized
those who were afflicted with it. This explanatory model was critical to the way
that Americans have constructed notions of risk and blame for HIV. The notions
of risk and blame has direct and important implications for public policy. She
further argues that this initial construction of HIV/AIDS as a “gay“ disease
influenced the social response to HN wortdwide. In societies where same

27

gender sex relations are explicitly prohibited or denied, or where cultural
constructs equivalent to “homosexual“ or “gay“ do not exist, risk for HIV could be
and was denied. Construction of HIV as a homosexual disease also encouraged
societies where heterosexual transmission is the nonrr to similarty deny risk.
EarIy epidemiologic explanations for transmission of HIV emphasized
“promiscuity' and “lifestyle factors“ (CDC 1981a; CDC 1981b). These
components of this explanatory model encouraged other societies with relatively

conservative sexual norms to both deny risk, and blame HN on “the West.“

Anthropology and HIV/AIDS Policy. Other anthropologists have described and
analyzed the social response to HIV with the explicit purpose of informing policy
reform. Herbert Daniel and Richard Parker (1993; see also Parker 1994) argue
that the time and place of the arrival of HIV is crucial to the responses
generated. HNIAIDS arrived in Brazil at about the same time that the country
was retuming to a democratic government, after two decades of repressive
military rule, and was faced with tremendous social and economic crises. The
Brazilian government at that time lacked the political will, the capacity and the
resources to address the epidemic. In a later work, Parker (1994:29) asserts:

...these developments have resulted in the extensive deterioration

of both the public health and social welfare systems, limiting

Brazilian society‘s capacity to address its many already existing

health problems....lt is within this context that the HIV/AIDS

epidemic began to take shape in Brazil in the early 1980's, and the

ways in which this epidemic has developed, as well as the ways in

which Brazilian society has responded to it over the course of its

first decade, have been affected by this particular set Of

circumstances.

Parker (1994) also linked the rapid emergence of non-governmental AIDS

28

service organizations in Brazil to the inaction of the government. These
organizations were supported, by and large, by international intergovernmental
agencies. It is Parker’s intent to highlight the multitude of forces that shaped
Brazil’s response to the epidemic and that are essential to be addressed in policy
reform. He states, “[sjuccess or failure may depend...on an ability to realize that
the most pressing questions that must be confronted may be less technical
than...political, shaped by the complicated forces that determine the political

landscape in different settings...“ (1994244).

Wnce Gil (1994) maintains that China’s AIDS policy is in accordance with
party ideology. According to Gil, China’s policy involves two broad strategies -
legal action and education. In response to the emerging epidemic, China
passed a number of laws designed to address HN. These included requiring the
issuance Of identity cards for HN—infected persons and instituting surveillance of
their movements. These laws also allowed for quarantine of HIV-infected
persons for the purpose Of medical care. Entry into China, by foreigners,
requires proof Of HIV-negative status. Gil notes that educational efforts,
particularly those related to sex, include content that is consistent with the state’s
view of sexuality, which is that sex is predominantly for procreation. “Education’s
role is to enable sexual decisions along approved, traditional lines of thought“
(Gil 1994217). Educational literature is presented only in officially sanctioned
rhetoric and terms related to sex, and sexual practices are vague. Gil’s work
illustrates that, “[i]n this paradigm, historical necessity requires the state to

govern human relationships and set limits to what individuals can and cannot do.

29

In turn the individual (when obligated by conscience and the social good) will
conform“ (1994220). Gil notes that his field work in China highlighted a serious
contradiction in beliefs about sexuality and in sexual expression, when compared
with forms of sex and sexual expression sanctioned by the state. Gil asserts that

this incongruence has serious implications for AIDS in China.

Much of this research presented in this section on extant literature on
HNIAIDS has implications and utility for public policy. While some published
research does provide commentary and critique of public policy as it relates to
HNIAIDS, it primarily highlights inadequacies of policy in responding to local
circumstances and the neglect in policy formulation to account for the social and
structural conditions and contexts that make individuals and populations
vulnerable to HIV/AIDS. Very recently, a very small body of literature has begun
to emerge which explicitly addresses HIV/AIDS policy, and in doing so, examines
the social, economic and political premises of policy and either predicting or
documenting its impact. Some Of this work makes specific recommendations for

policy reform.

Critical Policy Research. Susan Shaw (2006) examines community debate
regarding a proposed syringe exchange program (SEP) in Springfield,
Massachusetts. Specifically, she focused on opposition to the SEP, examining
the basis of this opposition from the perspectives of diverse constituencies.
While these constituencies (i.e., conservative white suburban residents and inner
city African Americans) share a similar political position in opposing the SEP,
they were derived from very different views on the role of the government relative

30

 

"“‘__1

 

to promoting the health Of the community. Just who constituted “the community“
affected by the proposal was at the heart of this divergence. Shaw argues that in
Springfield, complex identity politics governed perceptions about who had
legitimacy and authority in the debate. Acknowledging that “community
participation“ is viewed increasingly as the ideal for public health policy
development and practice, Shaw argues that it is important to closely examine
identity, particularly the basis upon which identity is constructed, the ways in
which it is articulated, and the means by which it is Iegitimated. In this way,

policy makers will be better able to understand the reasons why people may

support or reject their proposals.

Stigma has begun to figure prominently in public health discourse on
HIV/AIDS. Specifically, it is cited as critically hindering the effectiveness of
HNIAIDS programs in the United States and abroad. Parker and Aggleton
(2003) deconstruct “stigma“ and, in doing so, question its conceptual utility
relative to the design of effective HIV/AIDS programs and interventions. They
take issue, in particular, with the “classic formulation of stigma as a ‘significantly
discrediting’ attribute“ (Parker and Aggleton 2003:13) asserting that the thrust of
much of what has been published on stigma focuses on “perceptions of
individuals and the consequences Of these perceptions for social interactions“
(Parker and Aggleton 2003215). They highlight the limitation of programs and
interventions which are grounded in this conceptualization. Parker and Aggleton
argue that a more useful approach would be to focus on the structural conditions

which are linked with the reproduction of social difference. Parker and Aggleton’s

31

highlights the limitations of current strategies to address stigma, highlighting
ilure Of programs designed to address HIV-related stigma are not
dded within broader efforts and programs intended to address the
ural factors such as poverty, which reinforce stigma through exclusion from
and economic life. Importantly, Parker and Aggleton articulate an agenda
search and action which is directed to better understanding and overcoming
IDS-related stigma. In particular, Parker and Aggleton emphasize the
for policy research which
...aims to identify and describe the combinations of programme
elements that contribute to success in responding to [stigma], the
circumstances in which these programme elements are best
Operationalized...and the likely outcomes of specific kinds of
programme elements. It is essential that strategic and policy-
oriented research be sensitive to the broader policy context.
Programmes to address HIV and AIDS-related stigma...are
rarely...implemented in an ideologically neutral context.
Understanding the relationship between programme development
and implementation and the broader social context is central to the
success of efforts to disseminate and/or scale up existing
successes (Parker and Aggleton 2003220).
Suzette Heald’s work in Botswana deals explicitly with HIV/AIDS policy,
Ilarly with regard to the failure of these policies in stemming the epidemic
: country (Heald 2006; Allen and Heald 2004) . Heald traces the
rpment of policies dealing with HIV/AIDS in Botswana since the beginning
epidemic. These policies have been heavily influencad by Western
Iptions and ideas about what constitutes “good practice.“ Drawing on
em expertise, the government of Botswana’s first response to the
oning epidemic was implementation of a mass media campaign, entirely in

h, designed to promote the use of condoms. Heald and her colleague

32

 

:ribe the incongruity beMen the aim of this campaign and indigenous
erstanding Of disease transmission and the cultural meanings attached to
and sexuality. The impact of this disconnect was the introduction of
nonceptions about transmission (e.g., condoms cause AIDS) and anger
Ird the government for “promoting promiscuity“ which, in tum, fueled
stence, by churches, village chiefs and parents, to government efforts to
bat the disease, effectively undermining the credibility Of govemment-
Isored prevention efforts. Heald argues effectively that the failure of
’AIDS policies in Botswana was also related, in no small part, to structural
operational factors. Specifically, the policies were formulated and
emented centrally, rather than locally. The government of Botswana failed to
age village chiefs and councils, who wield considerable local influence, in the
gn of policies and delivery of programs. According to Heald,

The problem of paper policies that, given the political

circumstances and dominating understandings, have little real

effect is one that has plagued the issue of AIDS since the

beginning....Grand policy initiatives developed by AIDS experts and

woven, fonnulaically, into national programmes have

proved...difficult to implement.
impact of the failure of policy in this instance is a country with HIV
alence approaching 40 percent, that by 1997 became known as the AIDS

er of the world.

The preceding section illustrates that there is important, but scant,
arch which explicitly examines HIV/AIDS policy, the premises on which
y is based and which documents the impact of policy. I was unable to
tify any published research which specifically addressed the community

33

ng initiative. Such examination of HIV/AIDS policy is essential because
can directly impact the epidemic in terms Of preventing disease and death.

issertation attempts to contribute to filling this gap.

Iization of the Dissertation
This first chapter has provided an introduction to the topic of my

iation and presented an overview of the analytic framework to be used. A
iof the published anthropological literature on HIV/AIDS was included to

te the gaps in the current body of research that this dissertation attempts

Chapter 2 provides an elaboration of the critical-interpretive approach, the
k: framework that I use in this dissertation. The notion of community as a
incept in anthropology is highlighted, with an emphasis on the construction
rpression of community as social identity through the transaction of
IIIy-specific symbols. This chapter also presents a discussion of power,

Ilarly as it relates to the construction and expression of social identity.

Research methods are presented in Chapter 3. This chapter contains
)tion of data collection strategies, confidentiality of data and informed

rt considerations. I also explain the rather unconventional “field“ of study I
hosen for this dissertation, i.e., policy. Additionally, I have used this

er to situate myself relative to the research, as I occupied a unique position
h anthropologist and employee of the entity responsible for implementation

:y.

 

f" ' I

 

 

Chapter 4 presents the historical, social, and political context Of HIV/AIDS
beginning with its emergence as a new disease in the early 19808. This is done
in an effort to lay the foundation for understanding policy responses related to
HIV/AIDS in the US, especially the policy which led to the implementation of

community planning for HIV prevention.

Chapter 5 presents and discusses the setting for my research, which
included both physical and conceptual “sites.“ Michigan served as a local case
study for implementation of this national policy and so this chapter describes in
detail the community planning process for HIV prevention as it was implemented

in Michigan.

Chapters 6 and 7 encompass presentation Of the findings of my research.
In these two chapters, I seek to apply the critical interpretive approach to the
“problem“ of community planning. Specifically examining the construction of
community identity and the meanings attached to community, both on the part of
policy and policy makers, as well as by individuals participating in the community
planning process. The extent to which there is congruence between “community“
as defined in the policy on community planning and “community“, as it is
constructed and articulated by those involved in the process, is examined. The
relationship between community identity and knowbdge are also addressed,

particularly as they relate to the exercise and expression of power.

The final chapter of this dissertation encompasses a summary of the

major findings of my research as well as the limitations of this research. The

35

contributions to the field of medical anthropology made by my research are
discussed. The implications that community has for the relative success of
community planning as public policy is explored. My research findings suggested
several areas for policy refinement, or redirection which are addressed in the

final chapter.

CHAPTER 2
THEORETICAL CONSIDERATIONS
Introduction
In this chapter, I will describe the analytic framework that I use in this
dissertation. I begin with a brief general discussion of the concept of community.
This is followed by a discussion of community as is relevant to the field of public
health which is intended to provide the reader with an understanding of the
relevance of the concept of community within public health, and to highlight a
rather natural area of alignment between public health and anthropology. Public
health is Often described as having a community as the subject of its practice.

This is in contrast to the focus on the individual patient in clinical medicine.

In this chapter I also highlight the notion of community as a key concept in
anthrOpology, and follow this with a discussion of anthropological perspectives
which view the construction and expression of community as predicated upon
the transaction Of culturally-specific symbols. This is followed by a discussion
regarding the notion Of power, particularly as it relates to the construction and

expression of social identity.

Finally, I discuss the approach of critical-interpretive medical
anthropology, which I will use as the analytic framework for this dissertation. The
importance of examining relations of power, and the consequences of these

relations, in particular, is highlighted.

37

Contemporary Notions of Community

Community is a notion which is used with great frequency in our society
today. We speak of many kinds of communities, based upon a wide variety of
factors including physical characteristics, ideas, locality, nationality, ethnicity,
religion, residence, occupation, and political affiliations. Some current examples
include: the Polish community; rural communities; the Jewish community; the
intelligence community; the financial community; the gay community, and the
AIDS community. Community has both ideological and practical currency for
people. The notion Of community helps individuals locate themselves and others
in the social world. The notion of community both guides and provides a
framework for understanding human action, including thought and perception.
Community concerns shared ideas, values, activities and objectives.
Community, then, is a concept which is concerned with identity. Identity, in turn,

is an essential tool used by people in the “politics“ Of daily living.

The concept of community is so significant in our society that it pervades
even public policy. Over the past 20-25 years, public health policy has
increasingly focused on the involvement of communities in policy development
and implementafion (IOM 2002). Community involvement is viewed as essential
to improving education, facilitating economic develOpment, protecting the
environment and reducing health disparities. The research for this dissertation
was conducted with the intent to examine the ways in which community is
defined and articulated in one area of public policy - that regarding matters of
public health and, more specifically, as that policy relates to HN prevention.

38

Community In Public Health Discourse

The concept of “community“ began to be emphasized in the discourse on
public health beginning in the late 1960s. In the latter part of that decade, the
paradigm of public health began to shift from medical management of disease to
its current emphasis on health promotion and disease prevention. This shift was
associated with advancements in sanitation and medical science which
significantly decreased morbidity and mortality from infectious diseases (e.g.,
small pox, polio) and resulted in a rise in Chronic and degenerative diseases
(Rosenberg 1988), such as diabetes and heart disease. Thus, public health
efforts related to health promotion and disease prevention are largely concerned
. with identifying and understanding the behavioral and social determinants of
disease; identifying strategies to address these determinants; and establishing
the means for ensuring that these strategies are accessible and acceptable to
target pOpulations. Public health efforts benefit from engagement of impacted
communities in policy development, program planning, and, increasingly, in
service delivery. Engagement Of impacted communities can facilitate
identification of factors which influence health behavior or that influence
utilization of health services. Community development models of health care
rely on trained workers indigenous to a community, as a means of providing
culturally competent services that are simultaneously cost-effective (Institute of

Medicine 1988).

The new paradigm of public health was first formally articulated in the
Ottawa Charter for Health Promotion. The Ottawa Charter was drafted and

39

adopted at the First lntemational Conference on Health Promotion, July 17-21,
1986. Representatives of public health and other governmental agencies
concerned with health issues from 38 countries participated in this conference.
Through adoption of the Ottawa Charter, a global commitment was made to
emphasize health promotion and disease prevention in public health activities.
Most significant, for the purpose of this dissertation, the Ottawa Charter focused
on the meaningful involvement of communities in public health policy
development and implementation. According to the Ottawa Charter,

Health promotion is the process of enabling people to increase
control over, and to improve, their health....The prerequisites and
prospects for health cannot be ensured by the health sector alone.
More importantly, health promotion demands coordinated action by
all concerned: by governments, by health and other social and
economic sectors, by non-governmental and voluntary
organizations, by local authorities, by industry and by the media.
PeOpIe in all walks of life are involved as individuals, families and
communities....Health promotion works through concrete and
eflective community action in setting priorities, making decisions,
planning strategies and implementing them to achieve better
health. At the heart of this process is the empowerment of
communities, their ownership and control of their own endeavours
and destinies... Community development draws on existing human
and material resources in the community to enhance self-help and
social support, and to develop flexible systems for strengthening
public participation and direction of health matters. This requires
full and continuous access to information, learning Opportunities for
health, as well as funding support (World Health Organization,
1986).

Every ten years for the past three decades, the US. Department of Health
and Human Services (DHHS) revises and releases a plan for ensuring the
nation’s health. The emphasis on community in public health policy is reflected

in the change in titles of this document. The cunent title of the plan is “Healthy
Communities 2010,“ a title that replaces “Healthy People 2000.“ Many state and

40

 

 

local public health agendas have replaced the word “public“ with “community“ in
their titles (e.g., the Michigan Department of Public Health was renamed the
Michigan Department of Community Health in 1993). “Health educators“ are

now referred to as “community health outreach workers.“

Anthropology and Community

This dissertation argues that it is essential for public health policy to
embrace a concept of community that is dynamic. Community must be
considered to be dynamic because community is concerned with identity, and
identity is socially constructed, manipulated and reconstructed. Community as
social identity is therefore, dynamic and situational. Identity is a primary tool
used by human beings in political action, with all human action having a political
aspect to it. Social identity, more specifically the construction of it, is concerned
with access to, and exercise of, rights and recognition. Social identity is

employed by human beings in the service of power.

By examining the symbols used by people to express community identity
we can learn how a community defines itself and is defined by others. If we are
to describe the values, norms, attitudes and beliefs of a community with any
accuracy, it is essential that we have correctly defined that community. That is,
that we have identified the boundaries of that community.

In framing my approach to this issue, describing the specific values,
norms, attitudes and beliefs attributable to particular communities, was not of

particular interest to me in that it warm to be peripheral to the “problem“ of

41

community in AIDS public policy. Instead, I focused on describing the ways in
which the notion of community is defined and articulated in the context Of a
particular public policy initiative. I approached the “problem“ of community in
AIDS public policy from the perspective of the symbolic forms and processes that
both shape and are used to express social identity, and how the dynamic nature

of “community“ as social identity Offers access to power.

Community has been and, clearly will continue to be, a key concept in the
social sciences. Even so, it has been exceedingly difficult to precisely define.
There are many theories which have been applied to explaining “community,“ but
I find the approach of symbolic anthropology is the most useful and relevant for
the purposes of this dissertation. The thrust of symbolic anthrOpoIogy is that
culture operates as an independent system of meaning which can be deciphered
by interpreting key symbols. This approach to cultural analysis is embodied in a
statement made by Clifford Geertz (197325):

[Because] man is an animal suspended in webs of significance he

himself has spun, I take culture to be those webs, and the analysis

of it to be therefore not an experimental science in search of law

but an interpretive one in search of meaning.

Human behavior, including thought and perception, are prompted and guided
through interpretation of these symbols, i.e., the meanings that people attach to
various syrrrbols influence behavior. According to Turner (1976236):

Symbols instigate social action. In a field context, they may even

be described as “forces“, in that they are determinable influences
lnclining persons and groups to action.

“Community“ is a way of organizing our way of thinking about ourselves

42

and others (i.e., a cultural form). It provides a framework for interpreting the
behavior of others and it serves as a fiamework for our own behavior.

Peoples everywhere have developed symbolic structures in terms

of which persons are perceived not...as unadomed members of the

human race, but as representatives of certain distinct categories of

persons, specific sorts of individuals... The everyday world in

which the members of any community move; their taken-for—

granted field of social action, is populated not by anybodies,

faceless men without qualities, but somebodies, concrete classes

of determinant persons positively characterized and appropriately

labeled. And the symbol system which define these classes are

not given in the nature of things. They are historically constnrcted,

socially maintained and individually applied (Geertz 1973:363-364).
There are several key ideas encapsulated in this statement. The first is that
culture and, by extrapolation, cultural forms that denote identity, such as class,
ethnicity, religion, community, occupational categories, are created and
continually recreated through human action. No aspect Of culture is imposed
upon people as an Objective “social fact.“ Second, in that the creation of cultural
forms is dynamic rather than static, those cultural forms do not determine human
thought and behavior. Third, human behavior is not inherently meaningful. It is
made meaningful through the lens of culture, or forms within culture. Symbols,
specifically, become the vehicles for this “transaction of meanings“ (Cohen

19:35:17).

At its most basic level, community refers to a group Of people who share
an identity, based upon common interests, goals, norms, beliefs, attitudes and
values. Members of a community make, or at least believe that they make,
similar sense of the world, and that their “take“ on things is substantively different

from the “take“ of others. The sense of common values, ideas, beliefs, attitudes

43

and norms is not due to the deterministic influence of community as a structure
or form of culture, but rather because the symbols used to express them are
shared.

The symbol becomes associated with human interests, purposes,

ends, and means, whether these are explicitly formulated or have

to be inferred from the Observed behavior. The structure and

properties of a symbol become those Of a dynamic entity, at least

within its appropriate context of action (Turner 1967222).
The reality of community, then, requires a shared investment in a common body
of symbols. While “community“ is predicated upon shared meanings embodied
in symbols, these symbols are given meaning only through human action.
Identity, then, is “produced and reproduced in social interaction“ (Jenkins

1 997:40).

While members of a community share symbols, the meanings attached to
the symbols by each community member are not exactly the same. Each
symbol may have more than one meaning, each of which is invoked situationally.
Victor Turner suggests that one of the important features of symbols is their
capacity to act as a repository for multiple meanings while simultaneously
condensing meaning. In describing the properties of symbols, Turner (1967: 27-
28) states:

The simplest property is that of condensation. Many things and

actions are represented in a single formation. Secondly, a

dominant symbol is a unification Of disparate significata. The

disparate significata are inter-connected by virtue of their common

possession of analogous qualities or by association in fact or

thought....Thelr very generality enables them to bracket together

the most diverse ideas and phenomena.

Symbols enable “community,“ as a social identity, to be simultaneously collective

and individual. Identity is extemalized for the collective through social
interaction. It is internalized, at the level of the individual, through self-
identification. Because of the multi-vocal nature of symbols and because
identity is reproduced through social interaction, identity is neither fixed nor
unchanging. People can and do alter their identity, and their community

affiliation, depending on circumstances.

Communities are about differences as much as they are about similarities.
The similarities which unite such a group of people also distinguish them, in
some significant way from others. Community simultaneously implies similarity
and difference. It indicates “us“ and “them“, and therefore can be characterized
as relational; “identity is always a dialect between similarity and difference“
(Jenkins 1997213). While people lay claim to an identity for themselves within
the confines of some established boundary, that Claim must still be validated in
relation to some other group. It is a “boundary,“ defined symbolically, which
marks communities. It is the assertion of these boundaries, through social

interaction, which establishes, maintains and reinforces identity.

Boundaries which mark communities are necessary because the
boundary expresses the identity of a community. Boundaries are enacted
through the manipulation of symbols. People lay claim to an identity within the
confines of some established group boundary. The boundary of that group is
only “real“ In relation to some other group. In this sense, then, some degree of
external reinforcement is always required for successful boundary maintenance.

Group identity may be weakened where external reinforcement is not

45

forthcoming. Self-identification with a group simultaneously implies
categorization of some “Other“ group. The extent to which identity, ascribed to
that “Other“ is successful, depends on the extent to which it is consistent with
existing boundaries drawn by that “Other.“ This, of course, requires a mutual
understanding and investment in a common body of symbols denoting the
boundary between “us“ and “them.“

Ritual serves as one key way in which community boundaries are
symbolically asserted. Through ritual, the social identity of a community is
articulated. Through participation in ritual, the position of individuals as members
of a community is reinforced. The role that ritual plays in boundary maintenance
is best expressed by Anthony Cohen (1984:54):

At the level of group-as-a-whole, of orthodoxy, [rituals] say

something about the relation of the group to others. At the level of

the individual participant, they speak of the individual’s relation to

his group and to the world as mediated by his group membership.

Both construct and allow the individual to experience social

boundary.

This is the quality of rituals to which Turner (1967) refers as ‘multi-vocal’ and

‘multi-referential.’

Ritual refers to a broad range of human activity. A great deal of cultural
analysis has focused on sacred ceremonial activities. The potlatch among the
Tlingit and other Northwestern tribes serves as a classic example (Kan 1989) of
this type of ritual. More secular activities, such as ethnic festivals or holiday
celebrations also serve as examples of ritual activity. In the context of this

dissertation, it is important to highlight that the term “ritual“ is used broadly.

46

Ritual refers not to formal or sacred ceremonial activities, rather, ritual is used to
refer to those activities which are more “ordinary“ behaviors of everyday life.
According to Irving Goffman (196722):
The subject matter...is that class of events which occurs during co-
presences and by virtue of co—presence. The ultimate behavioral
material are the glances, gestures, positionings and verbal
statements that people continuously feed into the situation, whether
intended or not. These are the external signs of orientation and
involvement - states of mind and body not ordinarily examined with
respect to their social organization.
In essence, Goffman was arguing that face-tO-face interactions should be treated
as ritual behavior and should be examined as a means to understand the

“normative order prevailing within and between units“ (lbid).

Symbolic reversal is another key means by which community boundaries
are asserted and reinforced. Symbolic reversal involves norms and values being
'tumed on their head.“ In ritualized symbolic reversal, people deliberately
behave in ways which are opposite of proscribed ways. The Naven rite practiced
by the latrnul of New Guinea and cook fighting in Bali are two well-known
examples of symbolic reversal (Bateson 1958; Geertz 1973). By encouraging
and supporting behavior which is against the norm, symbolic reversals actually
highlight community norms and allow members to value them. The norm is the
community boundary. The symbolic reversal is a way of articulating it and

thereby facilitating community cohesion and ensuring continuity.

Symbolic reversal is also used to create community. Goffman (1963)
describes individuals who are in some way stigmatized as having ‘spoiled
identities.’ Assertion of the very characteristic which stigmatizes or othenrvise

47

disadvantages a person, endows that Characteristic with a positive value. In the
United States, racial and ethnic minorities have effectively used symbolic
reversal (i.e., ethnic ‘pride’) as a means of establishing a community identity

which is valued.

Community boundaries are relational - communities are marked in relation
to other communities. By reversing the value of the stigma, the relationship of
the previously stigmatized community has changed in relation to other
communities. In this context, symbolic reversal also has the effect of changing
the ways in which a community, previously disadvantaged or stigmatized,
interacts with other communities, which were previously advantaged. In these
ways, the stigma serves as a symbolic means of enacting community

boundaries.

Identity and Power

I have established that the notion of “communitY' as identity is constructed
through symbolic interaction and is dynamic. l have also established that the
boundaries of community are established and maintained through the
manipulation of cultural symbols. Finally, I have established that “community“ is
relational. It is now appropriate to turn to the question of “what purpose is served

by assertion/ascription of community identity“?

Richard Jenkins (1997) Offers an elegantly simple answer to this question.
In his discussion of ethnicity, Jenkins argues that identity is both nominal and

virtual. Nominal identity refers to names or classifications ascribed to individuals

48

or groups of individuals. Virtual identity refers to the consequences associated
with such names or classifications. Nominal identities are segmentary and
hierarchical, enabling people to participate in a plurality of identities. People
assert multiple identities, i.e., membership to one group or another, depending
on context. The decision to assert membership (in the case of oneself) or
ascribe membership (in the case of others) to one group or another is informed,
in part, by where such groups fall in a relative hierarchy. Wrth respect to virtual
Identity, people naturally want to assert identity with a relatively elevated position
on the social hierarchy. Some groups simply have more social value and
significance than others in given contexts. Thus, the importance in the
difference between identities “...Iies in the consequence of each: in terms, for
example, of rights and responsibilities, or access to social and economic
resources, or social recognition (Jenkins .1997:41).“ In short, identity is about

access to, and exercise of, power and authority.

The notion of multiple and shifting identities would seem to be relatively
straightforward; human beings “have“ and can “choose“ from among many
identities in a way that best serves the situation or the end. Or, inversely, some
recognized commonality or differences is sufficient to ascribe identity. Identity is
not simply a matter of what “hat“ one wears or into what “box“ one fits. If instead
we vievn

...identity as a “meeting point“ - a point of suture or temporary

identification - that constitutes and reforms the subject so as to

enable that subject to act It is in this way that we bring together

identity and subject formation with the question of agency (Gupta
and Ferguson 1997: 13).

49

Through the process of inclusion and exclusion that allows for the articulation
and manipulation of social identity, human beings are made into subjects, and
are remade so, repeatedly. Identity, then, is best understood as an effect of
“structural relations of power...“ and, as such, “...identity emerges as a
continually contested domain“ (Gupta and Ferguson 1997:14). Insofar as identity
is both dynamic and “contested,“ a thorough understanding of community as
identity requires an examination of the processes employed in validating and

authenticating identity.

Wrth respect to the issues central to this research, public health policy, the
social constnrction of identity is concerned with access to social recognition for
and by peOple who are among those traditionally marginalized in this society,
such as drug users, prostitutes, and homosexuals. HIV community planning, as
a public health policy, concerns access to and control of economic and political
resources necessary to ensure the health and well-being of the citizenry of the
United States. Finally, it is concerned with the rights Of individuals balanced
against the responsibilities of government in ensuring the health and safety of its
citizenry in a way which is effective, fair and efficient. Community planning is

very much concerned with access to and exercise of power and authority.

Foucault’s KnowledgelPower and Subjectivity

The work of Michel Foucault provides an exceptional framework for an
exploration of power as it relates to identity and its social construction. The
scope of his work in this regard is vast and there are a great many aspects which
have relevance and obvious application to the study of public policy. For the

50

purposes of this research I will, however, restrict my attention to an examination

of Foucault's notions of power/knowledge and subjectivity.

For Foucault, power does not exist as a social structure. It is not a quality
with which certain people or institutions are endowed. Rather, power exists in
and operates through human action.

And “Power“, insofar as it is permanent, repetitious, inert, and self-
reproducing, is simply the over-all effect that emerges from these
mobilities....[P]ower is not an institution, and not a structure; neither
is it a certain strength we are endowed with; it is the name that one
attributes to a complex strategical situation in a particular society
(Foucault 1978; 93).

It seems to me that power is “always already there“, that one is
never “outside’ it, and that there are no ‘margins’ for those who
break with the system to gambol in....To say that one can never be
’outside’ power does not mean that one is trapped and condemned
to defeat no matter what...l would suggest rather... (I) that power is
co-extensive with the social body; that there are no spaces of
primal liberty between the meshes of its network; (ii) that relations
of power are intenrvoven with other kinds of relations (production,
kinship, family, sexuality)...(v) that power relations do indeed
“serve“, but not at all because they are ‘in the service of’ an
economic interest taken as primary, rather because they are
capable Of being utilised in strategies...(FoucauIt 19802142).

Foucault was not interested in an analysis of power and its effects, per se.
Rather his focus was to examine the methods by which human beings are made
“subjects.“ Two meanings are implied by this term: “subject to someone else by
control and dependence, and tied to his own identity by a conscience or self-
knowledge. Both meanings suggest a form of power which subjugates and
makes subject to“ (Foucault 1983: 212). For the purposes of this research, I

have Interpreted Foucault’s notions of making Of “the subject,“ as analogous to
construction and articulation of identity. Thus, identity, in my view, is a tool used

51

by individuals in accessing and exercising power. It is simultaneously an effect

of the exercise of power.

Foucault articulated three modes of objectification by which human beings
are made into subjects (Foucault 1983: 208). The first mode Foucault refers to
as “dividing practices.“ Exclusion, both physical and social, is the central feature
of dividing practices. Through various strategies, people are given identity by
being grouped into “us“ and “them.“ Frequently, though not entirely, dividing
practices are informed by “sciences,“ as in the case of mental illness or insanity,

as addressed by Foucault in Madness and Civilization.

“Scientific classification“ (Rabinow 198428) is the second mode used in
making human beings into subjects. Scientific classification emerges from “the
modes of inquiry which try to give themselves the status of sciences; for
example, the Objectivizing of the speaking subject in grammaire generals,
philology, and linguistics... or the sheer fact of being alive in natural history or
biology“ (Foucault 1983: 208). This mode has an obvious relationship to dividing
practices, but is also independent of them. Scientific endeavors seek to
categorize or differentiate Objects Of inquiry, ostensibly in a “Value free“ manner.
Epidemiology, for example, classifies people according to race, behavior,
economic status, or other characteristics as a means Of analyzing and ordering
disease. Foucault’s point about scientific classification is that scientific
discourse does not stand above or apart from social action. Because of this,
scientific discourse Will both influence and be influenced by social action (such

as when scientific classifications become the foundation of dividing practices).

52

Rabinow (1984211) refers to the third mode of oban people as
“subjectification' and it is related to “the way a human being turns him or herself
into a subject“ (Foucault 1983: 208). Foucault’s position seems to be that
dividing practices are concerned with domination. The person who is made a
subject through dividing practices can be considered to be a “victim“ and is,
essentially, passive in the process of being made a subject Subjectification, on
the other hand, requires the active engagement of human beings in identify
formation. Both modes of objectification may, however, use scientific

classification as the foundation for making human beings into subjects.

The phrase “knowledge is power“ is certainly a cliche, but neatly
encapsulates Foucault’s notion of the relationship between power and
knowledge. Power, access to it and exercise of it, is predicated upon the
possession and the deployment of knowledge. Simultaneously, the exercise of
power produces knowledge:

We should admit...that power produces knowledge; that power and

knowledge directly imply one another", that there is no power

relation without the correlative constitution of a field of knowledge,

nor any knowledge that does not presuppose and constitute at the

same time power relations (Foucault 1979228).

For Foucault, power and knowledge are in a reciprocal, reinforcing relationship.
Knowledge is both an instrument and effect of power relations. Simultaneously,
however, knowledge can also undermine power by serving as a point of

resistance.

Foucault distinguishes between two types of knowledge, one is discursive

or empirical knowledge mated in “sciences.“ The other is “subjugated' or

53

popular knowledge, rooted in local context and experience. These forms of
knowledge are deployed and manipulated through the process of turning human
beings into subjects. Foucault viewed discursive knowledge as broadly
perceived to have greater authority than subjugated knowledge. Consequently,
those in possession of (and ability to use) such knowledge are, generally,
perceived as having more power than those who do not. Subjugated
knowledges can, however, make strategic use of discursive knowledges in the

exercise of power and are often reflected in acts of resistance.

For Foucault, resistance is a key concept with respect to understanding
the exercise of power.

Where there is power, there is resistance...this resistance is never
in a position of exteriority in relation to power.... [The existence of
power relationships]...depends on a multiplicity of points of
resistance: these play the role of adversary, target, support, or
handle in power relations. These points of resistance are present
everywhere in the power network....there is a plurality of
resistances (Foucault 1978: 9596).

Foucault views resistance as a struggle related to the effects of power, a product
Of the privibge of knowledge. Of particular relevance to this dissertation is that
he views resistance as:

[Sjtruggles which question the status of the individual: on the one

hand, they assert the right to be different and they underline

everything which makes individuals truly individual. On the other

hand, they attack everything which separates the individual, breaks

his links with others...and ties him to his own identity in a

constraining way (Foucault 1983: 212).
Resistance, then is concerned with gaining or exercising power by challenging,
subverting, or manipulating the knowledge that reinforces power. Resistance is

relevant to the question of identity in that the experience of resistance

54

“constructs and reconstructs the identity of subjects“ (Gupta and Ferguson

1997:19). Resistance can serve to both reinforce and undermine identity.

In the context of the policy of community planning for HIV prevention,
exercise of power will be clearly demonstrated to be intricately linked with the
construction, articulation and manipulation Of social identity. Further, I will
demonstrate that the deployment of knowledge, both discursive and subjugated

knowledge, are key to social identity construction and boundary maintenance.

Critical Interpretive Anthropology

An interpretive framework was clearly indicated for analysis of the
symbolic processes associated with construction and expression of community
and social identity. Because the subject of my research involves local
implementation of a federal policy, broader historical and societal factors had to
be considered relative to how such factors found expression and were
understood locally. An interpretive approach alone was inadequate for such
analysis. According to Marcus and Fisher (1986244),

[I]nterpretive anthropology, concerned primarily with cultural

subjectivity, achieves its effects by ignoring or finessing...[the]

issues of power, economics, and historic context. While

saphisticated in representing meaning and symbol systems,

interpretive approaches can only remain relevant...“ they can come

to terms with the penetrations of large-scale political and economic

systems that have affected, and even shaped, the cultures of

ethnographic subjects...
A critical—interpretive approach, however, provides an appropriate framework for
analysis. This approach explores symbolic processes within the context of

historical and societal forces which shape expression of these processes.

55

The critical-interpretive approach in medical anthropology can be
characterized as a theoretical and practical framework for understanding the
interaction between social, political and economic forces and the experience Of
and meanings associated with illness. According to Singer (1995:81) this
approach is “peculiarly anthropological in the sense that it is holistic, historical
and immediately concerned with on-the-ground features of social life, social
relationships, and social knowledge, as wall as with culturally constituted

systems of meaning.“

The first task of critical-interpretive medical anthropology is to describe the
culturally specific symbolic dimensions of illness and associated meanings.
Ethnographic descriptions are situated within a historical, social and political
context to illustrate the ways by which macro-level societal forces impact and
influence local action and meaning. Situating the symbolic dimensions of illness
in this way enables them to be understood and explained at multiple levels
Including individual, institutional or system (e.g., health system, hospital) and
macro—social levels (Lock and Scheper-Hughes 1996).

Cultural criticism is the second task for critical-interpretive anthropology
and is aimed at demystifying the “modes of thought in social action and
institutional life“ (Marcus and Fisher 19862152). The critical-interpretive
approach in medical anthropology aims to elucidate representations of Illness as
metaphors that express social relations, particularly relations Of power. According
to Good (1994: 58), “A ’critical’ analysis...is thus one that renders explicit the

social and political meanings covertly articulated in the language and action of

56

illness....“(see also Baer, at al., 2003; Singer 1995). In this way, critical-
interpretiva medical anthropology provides a framework for exploring power, Its

exercise and uses.

Obtaining a fuller understanding of power, its uses and workings, allows
us to better understand the consequences of the exercise of power. Addressing
the issue of power is essential to ensuring the relevance and utility of medical
anthropology. Doing so allows us to move beyond descriptive analysis and
toward explanation with practical import.

Reference to a cultural structure alone, or even to a dialectic of a

structure of meaning with the world, will not yet explain how given

forms Of significance relate to transformations of agriculture,

settlement, sociopolitical organization, and relations of war and

peace. To explain what happened... we must take the further step

of understanding the consequences Of the exercise of power (Wolf

1 9902594).

Examining relations of power allows us to better understand why people do what

they do and the implications associated with what they do.

A critical-interpretive medical anthropology represents culturally-specific
symbolic dimensions of illness and the processes through which meaning is
constituted. It can simultaneously elucidate the social, historical and political
forces that influence the meanings associated with sickness, across multiple
levels of society (as well as the distribution of sickness). Importantly, this
approach brings into relief the ideology and values of the broader society by

illustrating their presence within and effect upon social relations (Beer 1997).

As a primarily applied field, medical anthropology can be strengthened

57

and made more relevant by a critical-interpretive approach. A commitment tO
accurately and fully representing “local“ knowledge and meaning is a hallmark of
the anthropological tradition. Through use of a critical-interpretive approach,
anthropologists can give voice to the marginalized and disaffected. A critical-
intarprative approach illuminates features of the structural environment, their
influence on local social relations and the effect that these have on health
Issues.

[A] critical-interpretive medical anthropology can elucidate the

social, historical and political forces that determine the distribution

of sickness and society’s response to that sickness. It

simultaneously exposes...the many voices engaged in the struggle

to respond to sickness...and reveals how oppressive global and

societal forces are present in small details of living and dying (Good

1994259).
In this way, critical medical anthropology can suggest strategies for structural

reform.

The critical interpretive approach recognizes that knowledge is a product
of the dialectic between culture and social relationships. In this way, a critical
interpretive approach positions the anthropologist to comment upon the functions
and uses of knowledge. Through use of a critical-interpretive approach, medical
anthropology becomes a tool for intervention as much as it is an academic

discipline (Farmer 1999, Singer 1995).

Summary

This chapter has addressed the analytic framework for this dissertation. I
began the chapter by introducing community as a central concept for
anthropology as well as the field of public health, highlighting the natural linkage

58

between the two fields. In this chapter I also explored the notion of community
as a product of the transaction of culturally meaningful symbols and highlighted
the link between community and construction and expression Of social identity.
This chapter also discussed the dynamic nature of community as social identity
with respect to its relationship to the exercise of power. Finally, I discussed
critical interpretive anthropology, the analytic framework used for this
dissertation. In the next chapter, I turn to a discussion of the research methods

used for this dissertation.

59

CHAPTER 3
METHODS
Introduction
This chapter addresses methodological issues associated with research
for this dissertation. I begin with a brief discussion of policy as a field of study.
Next, I situate myself relative to the research, highlighting implications for data
collection and analysis. Finally, I address data collection and analysis, including

informed consent procedures.

Policy as a Field of Study

Anthropologists examine connections between cultural forms, social
processes and human action. Anthropological field research has traditionally
focused on a particular locale or “a people.“ This research involved what is,
admittedly, non-traditional “field work.“ The work was non-traditional in the
sense that the “field“ of study was not located in physical space . It could not be
characterized by distinct geographical boundaries. Instead, the “field“ of study
was policy. Policy, Shore and Wright (1997214) argue, is properly and
appropriately conceived of as a “field“ for study, in so far as policy is a “social
and polrtical space articulated through relations of power and systems of

governance.“

Traditional field research frequently requires attention to different “levels“
of both meaning and action. Field research focused on policy, particularty
national-level policy, mquires attention to different “levels“ of meaning and

action. It simultaneously, however, requires attention across different “sites,“

both physical and conceptual within each “level.“ Shore and Wright refer to this
as “studying through“:

The sheer complexity of the various meanings and sites of policy

suggests that they cannot be studied by participant Observation in

one face-tO-face locality. The key is to grasp the interactions (and

disjunctions) between different sites or levels in policy processes.

Thus, “studying through“ entails multi-site ethnographias which

trace policy connections between different organizational and

everyday worlds, even where actors in different sites do not know

each other or share a moral universe (Shore and Wright 1997:14).

Wrth respect to community planning for HIV prevention than, it was
essential that field work encompass national, state and local level processes.
Simultaneously, at each level, attention had to be given to multiple “sites.“ I use
the term “sites,“ in this instance, to denote both physical and conceptual “space.“
In terms of physical space, “sites“ refers to the geographical situation of planning
processes (e.g., states, regions, cities). In terms of conceptual space, “sites“
refers to affiliation (e.g., federal agency, state health department, community)

both through self-identification and by ascription.

Field work addressed multiple levels associated with implementation of
this policy initiative. Multiple conceptual sites were also examined through this
research. In order for the research to be manageable, it was necessary to limit

the number of physical “sites“ Included. Michigan served as a case study.

Situating the Researcher

The community planning initiative came to my attention as a result of my
affiliation with the Michigan Dapartrnent of Community Health’s Special Office on
AIDS Prevention (SOAP). I was under contract with SOAP, beginning in 1988,

61

to conduct prevention research designed to guide development and evaluation of
HNIAIDS prevention programs. With the implementation of community
planning, my contract with SOAP was expanded to include technical assistance
in support of the planning process and evaluation of the planning process. I was
asked to take on this role because, in addition to needed technical expertise, my
involvement in prevention research had garnered a fair degree of credibility and
trust with HIV/AIDS prevention service providers, including local health
departments, community based organizations (CBOs), non-governmental
organizations (NGOs), and advocacy organizations throughout Michigan. This
credibility and trust were deemed by the director of SOAP as essential to

ensuring succesle implementation of this policy initiative.

My initial interest and enthusiasm about undertaking this role was that the
community planning initiative represented an opportunity, unprecedented in
public health, for beneficiaries of public health services to have a direct and
important role in informing those services. That the initiative held the promise of
turning the tide on an emerging and increasingly devastating epidemic,

intensified my interest.

Throughout my early involvement in the community planning initiative, l
was fascinated by the discourse on “community,“ particularly how the concept
was both articulated and manipulated by participants. I also came to see that the
policy itself, shaped the way that participants constructed themselves and others.
Community is a classic “problem“ in anthropology and the community planning
initiative seemed to provide a natural and interesting opportunity for “field work.“

62

With the support and endorsement of the director of SOAP and the community
co-chairs of the statewide community planning group (SCPG), I initiated the

research for this dissertation.

In Emptying Beds, Lorna Rhodes (1991 :3) acknowledges that her role as
simultaneously employee and researcher in an acute psychiatric treatrnant
facility mediated her perspective on her work. She was simultaneously an
insider and an outsider in ways which both enriched her analysis and sometimes
made it difficult to sort out and balance multiple perspectives. Because of my
role in the community planning initiative, I experienced shifting, and Often
contradictory, perspectives throughout my field research and constantly
struggled to balance these perspectives. As a researcher, I was an outsider to
the process. As a paid consultant to the health department, I was an insider to
the state health department, the CDC, and some national organizations. I was
also an outsider to the CDC, in some contexts, given my affiliation with a state
health dapartrnent. Wrth community planning group (CPG) members, I was an
insider due to the trust and credibility that I had previously established with many
of them through prevention research efforls, but was also, simultaneously, an
outsider in so far as I was affiliated with the state health department.

My perspectives were frequently contradictory, as well. As a consultant to
the state health department, I was charged with facilitating implementation of the
planning process pursuant to federal guidance. Because the guidance on
community planning contains both vague and conflicting statements regarding
roles and responsibilities of health dapartrnents and community planning groups

63

(CPGs), administering it “by the book,“ undermined the authority and
responsibilities of the state health department. Failing to administer it “by the
book“ subverted the intent and spirit of the policy. As a “private citizen,“ I came
to recognize that the policy was well intended and had value as a public health
tool, but was poorly conceptualized and executed through the federal guidance
on community planning. In this regard, I realized that the success of the policy in
accomplishing its goal was going to require a great deal of time, effort and
sustained commitment on the part of many individuals, organizations and
agencies. I came to realize that I, like the subjects of my research, held multiple
and shifting identities and that the perspectives associated with these multiple

identities were more than occasionally contradictory.

Because I had to shift between multiple identities and perspectives, and
because I had to bridge multiple constituencies, it was important that I establish
trust with CPG members and potential key consultants. I believe I was fairly
successful in this regard due, in part, to my personal communication style which
might be best characterized as thoughtful, but direct. As a consultant to the
state health department, I was frequently in the position Of articulating a health
department policy or a decision made by the health department to CPG
members. Occasionally, CPG members were unhappy, and sometimes quite
angry, with a particular decision. Nevertheless, I tried to be as direct and honest
as possible in communicating these policies or decisions. At one time, I had to
present, to the Statewide Community Planning Group (SCPG), the health
dapartrnent’s policy of “abstinence only“ education for school age youth. This

policy was contrary to the priorities for prevention programming established by
the SCPG, and meant that the health department could not endorse or fund HIV
prevention programming for school-age youth which was anything other than
abstinence only. SCPG members demanded an audience with the Dimctor of
the state health department as well as with the Governor. They were also
developing plans to initiate a letter writing campaign to various elected officials
protesting the health department’s policy. I was able to successful diffuse the
anger of SCPG members by helping them understand the context of the policy
and steer them toward productive strategies. In this situation, one SCPG
member commented on my communication style:

I was so angry with the [AIDS program]. I thought we had

the power to make these decisions. But you helped me to

understand that this was bigger than you. You’re not like

other bureaucrats. You tell us the truth and don’t try to

bullshit us. If we want the real deal we call you.
In this matter and other similar matters, I was careful to keep in mind that I
represented the health department and therefore had to remain conscious of my
obligations as a representative of that agency, including the parameters of my

authority.

Data Collection

Data collection for this research was formally initiated in March of 1996
and was completed in Febnrary of 1998. Both primary and secondary data
sources have been used. Primary data were collected through two methods:
participant observation and key consultant interviews. It is important to note that
while field research was formally completed in 1998, I have continued my

affiliation with the state health department Through this affiliation, I have been
afforded the Opportunity to watch, over more than a decade, the changing
dynamic of HIV/AIDS policy, including community planning, in Michigan, as well
as nationally. I have witnessed ongoing interpretation, reinterpretation, and
revision of federal policy on HIV prevention. The experience and knowledge
gained through this has, unarguably, influenced my thinking about HIV/AIDS
policy in general, and community planning as policy, specifically. I believe,
however, that the benefit of this “historical“ knowledge is a richer and more

mature analysis.

Participant-observation served as the primary research methodology.
During the course of my field work, I attended 20 meetings of Michigan’s
Statewide Community Planning Group for HIV Prevention. Meetings rotated
among seven of eight planning regions (Michigan’s Upper Peninsula constituted
a planning region, but logistical and resource considerations precluded
convening SCPG meetings in this planning region). I attended each monthly
meeting (sometimes held via teleconference) of the Membership Committee of
the SCPG. This Committee had the responsibility for ensuring that the SCPG
met federal requirements regarding CPG membership. This Committee also had
responsibility for orientation of new members. While proceedings of each
meeting of the SCPG and the SCPG Membership Committee were tape
recorded, I relied primarily upon my detailed written notes and published meeting
minutes, utilizing tape recordings only to clarify or fill in gaps in my notes. Prior
to initiation and subsequent to completion Of formal fieldwork, I attended all

meetings Of the SCPG, which occurred monthly, from 1994 to 1996. My notes

from these meetings were less detailed but served as important references.

During the period of formal field work, I attended at least one meeting of
each of the eight regional CPGs (RCPGs), for a total of 12 meetings.
Sometimes my attendance was at the request Of the RCPG, to address a
particular issue such as how the department made funding decisions. On other
occasions, I asked to attend the meetings, usually based upon review of the
proposed agenda. Detailed written notes served as my record of regional CPG
meetings. Prior to initiation and subsequent to completion of formal field work, I
attended meetings of each regional CPG at least once annually. My notes from
these meetings were less detailed, but frequently served as an important
historical reference to aid in putting issues and activities of regional CPGs in

context.

A number of other events and activities also provided ample Opportunity
for collection of primary data through participant observation. One important
event was an annual “retreat“ sponsored by the SCPG. Retreats were planned
by the SCPG, usually by a “retreat planning committee,“ and were intended to
serve as “skills-building“ and networking opportunities for the membership of
regional CPGs and the SCPG. I attended two retreats during the period of
formal fieldwork.

Technical assistance workshOps were held periodically and were
specifically focused on required planning tasks and were more intensive with

67

resmct to enhancing the knowledge and skills of participants. I attended three
technical assistance workshops that addressed: using epidemiologic data in
planning; prioritization of populations and prevention needs; and conflict
management Proceedings of the retreats and technical assistance workshops
were not tape recorded. However, I did take detailed notes of workshops and

retreat activities which held particular relevance for this research.

I met periodically with the director of Special Office on AIDS Prevention,
as well as key SOAP staff to discuss the planning initiative, including its
direction relative to bdaral requirements, technical assistance needs, and
evaluation of the planning process. These meetings provided an opportunity to
gain an understanding of the perspectives of public health professionals charged
with implementing a critical policy initiative. Relatively brief handwritten notes
serve as the record Of these meetings. When the topics Of discussion from
these meetings was particularly relevant to my research, I made more detailed
notes subsequent to these meetings.

To fully explore community planning, it was essential that my field work
address the multiple levels and multiple “sites“ through which the process
operates. It was necessary that data collection and analysis encompass

national-level processes, in addition to state and local level processes.

A four-day National Community Planning Leadership Summit (CPLS) was
held annually, each year in a different location. The Summit is co-sponsored by
the CDC and several national level non-govemmantal organizations which

include the Academy for Educational Development (AED), the Council of State
and Territorial Epidemiologists (CSTE), the National Alliance of State and
Territorial AIDS Directors (NASTAD), the National Minority AIDS Council (NMAC)
and the National Association of People with AIDS (NAPWA). This conference is
designed specifically to increase the knowledge and skills of people, particularly
community representatives, involved in the planning process to enable them to
fully and competently participate in the planning process. Thede of workshops
and plenary presentations addressed a wide range of topics including prevention
program issues, leadership development for individuals who chair or facilitate
CPGs, technical skills related to planning tasks (e.g., conducting a gap analysis,
compiling an inventory of prevention resources) and policy issues that impact on
HIV prevention and/or community planning. CPLS workshops are delivered by a
mix of national and local “experts,“ including CPG members. Plenary sessions
featured national leaders in HIV prevention, such as Cleve Jones, founder of the
AIDS Quilt Project, and Patsy Fleming, the former Director of the Office on
National AIDS Policy. Celebrities such as Hillary Clinton, Gmg Louganis, and
Rudy Galindo have been featured plenary speakers. Each state is required to
financially support the participation, in this conference, of its CPG co-chairs.

I attended two of the annual CPLS during the period of field research.
These conferences provided an opportunity to examine the perspectives of
Michigan’s CPG representatives in a different milieu, whereby they were able to
compare their experiences with those of CPG members in other states. During
each CPLS I made a point of talking, informally, with many of the Michigan

representatives. My intention was to ascertain their impressions of community
planning and, in particular, how they perceived Michigan’s process, in
comparison with other states. My attendance at the CPLS also provided an
opportunity to observe the CDC’s public presentation and representation of this
policy initiative as well as that Of national non-govemmantal organizations who
served as cO-Sponsors of the event. I made brief handwritten notes during
workshops and plenaries. More detailed notes were made subsequent to the

conferences.

Finally, the CDC supported an annual “External Review of Continuation
Applications.“ Through this review, each state’s application for the next year‘s
federal HIV prevention funding was reviewed and evaluated against pre-
determined criteria by a panel of individuals external to the CDC. Reviews were
convened over a five-day period during which multiple review “teams“ were
expected to review and evaluate the application of up to six states and provide
written feedback as to the strengths and weaknesses of each application. Based
upon CDC’s funding application guidance, in excess of one-half of health
department’s applications addressed commianca with federal mquirements on
community planning. Thus, the review was substantially concerned with

evaluating progress in implementing community planning.

Each review team was comprised of CPG members, state health
department representatives, experts in epidemiology and experts in
behaviorallsocial science. Statewide prevention plans accompanied funding
applications. These prevention plans are also evaluated by reviewers for

70

compliance with predetermined criteria. Of particular interest to this research is
the review and evaluation of compliance with federal requirements on CPG
membership and facilitation of a planning process which encourages the input of

diverse communities.

I participated in two of these external reviews. Having to review up to six
applications and associated attachments in a short time period and provide
thoughtful feedback was grueling to say the least, as some applications exceed
1,000 pages, including attachments. It was through participation in these
reviews that I was able to observe how the federal requirements were interpreted
and expressed by the multiple stakeholders that review teams represented.
What was particularly interesting and revealing, was that the multiple view points
and divergent interests and agendas frequently resulted in conflict, but had to be
reconciled for the purpose of providing a coherent evaluation of the application. I
was not able to take detailed notes based on these deliberations. Subsequent to
these reviews I did, however, make notes on general impressions and the key
issues discussed by the review team. Participation in national-level meefings,
conferences and activities helped me to frame and refine research questions and
suggested additional areas of inquiry. It also allowed for some comparison,
across states, of the community planning process.

I conducted in-depth interviews with ten key consultants. Consultants
were selected to represent a range of perspectives on, and involvement in,
HNIAIDS policy, in general, and community planning specifically. In keeping
with my approach to examine processes at multiple levels and across multiple

71

“sites,“ consultants interviewed for my research represented state and federal
government health agencies, state and national non-governmental organizations
and Michigan’s CPGs. Each of the consultants interviewed for this research had
been involved in community planning since its inception. Many were, in fact,
instrumental in the development of the policy, having participated in the
discussions and debates which directly resulted in the community planning

initiative, including development of the guidance document which codifias the

policy.

Two of my consultants were affiliated with the CDC in upper—level
management positions associated with the HNIAIDS prevention program. Two
consultants were the executive directors of national non-govemmental HNIAIDS
organization. One managed the HIV/AIDS prevention program for the health
department in Michigan and the remaining five consultants were members of the
SCPG. Four of these five were also employed by community-based
organizations funded by the state health department for HNIAIDS services. I
had surprisingly little difficulty in gaining access to these consultants, particularly
those at higher levels of federal agencies. I attribute this both to the enthusiasm
for the potential of this initiative and to the support of the state health
department’s AIDS program manager who was able to facilitate my access to
these individuals.

I conducted key consultant interviews as a means to refine research
questions and to Obtain detailed infonnatlon to support my conclusions. In order
to contextualiza the remarks of my consultants, I asked each to describe for me

72

how they came to be involved in HIV prevention, including their involvement in
community planning. The core of the interview included questions intended to
explore how “community“ was conceptualized, from the consultants’ own
perspectives. I also explored their perceptions regarding how other

constituencies conceptualize and express “community.“

The final area explored with consultants related to their impressions Of the
relationship between the various definitions of “community“ and the effectiveness
of the community planning initiative with respect to achieving both its goals and
their expectations for the initiative. Interviews were initiated in May of 1996 and
completed in September of 1997. An interview guide, available in Appendix A,
was used to ensure consistency between the interviews, but was not rigidly
adhered to. This allowed a free flow of discussion and assisted in obtaining

detailed information on areas of particular interest to consultants.

Primary interviews were conducted, in-person, at a time and location
convenient to the consultant. Sites for interviews included the offices of
consultants as well as coffee shops, hotel lounges and airport frequent flyer
clubs. Interviews took approximately one hour to complete. Secondary
interviews were conducted with seven of the consultants, in order to confirm or
clarify information obtained during the primary interview or to obtain response to
other issues as the conceptual framework of the project was refined. Secondary
interviews were brief and informal and were mainly conducted via telephone. All
primary interviews were tape-recorded and transcribed. Detailed notes were kept

on secondary interviem.

73

Secondary Data Sources

Shore and Wright (1997215) cite policy documents as an essential
material to be used in anthropological research on policy:

Treating policy as a new anthropological field means not only

working in various sites, but also with new kinds of materials.

Among the most important are policy documents. There is a long

anthropological tradition of treating historical materials as a

valuable source of ethnographic data. The same approach can be

taken to analysing policy documents as “cultural texts.“ They can

be treated as classificatory devices, as narratives that serve to

justify or condemn the present or as rhetorical devices and

discursive formations that function to empower some and silence

Others.
There is a wealth Of written documentation related to HIV/AIDS public policy,
specifically the community planning initiative. Review and analysis of data
contained in these documents was essential for two reasons: (1) these
documents assist in placing community planning wiflrin the historical context of
HNIAIDS policy, and (2) they are the mechanism through which AIDS policy is

publicly communicated and articulated.

Specific sources of archival data consulted during this research include
federal legislative documents (e.g., Congressional bills, enacted public laws) and
legislative and policy analyses conducted by various state and federal agencies

as well as non-govemmental organizations.

The community planning guidance and companion documents issued by
the CDC were, obviously, a critical source of reference. CDC produced many
documents intended to amplify and clarify the guidance or to provide specific
technical guidance on planning tasks. Included among these:

74

Handbook for HIV Prevention Community Planning

HIV Prevention Community Planning: An Orientation Guide
Facilitating Meetings: A Guide for Community Planning Groups
Assessing the Need for HIV Prevention Services: A Guide for
Community Planning Groups

. Setting HIV Prevention Priorities: A Guide for Community Planning
Groups

The CDC also provided financial support to a number of national non-
governmental organizations to produce documents aimed at facilitating
community participation in planning activities. Such documents targeted specific
audiences including, person’s living with HNIAIDS, African Americans, Latinos,
Asian and Pacific Islanders, Native Americans, rural communities, and “youth.“
These documents contributed to my understanding of how various communities
are defined, particulariy what features have salience with respect to constructing

community.

CDC released annual reports evaluating community planning. These
reports were based, in large part, on findings from the External Review. They
were helpful in examining the extent to which the goals of community planning,
particularly with respect to community participation, were being realized at a
national level. They also served to provide a context for the ongoing

interpretation and renegotiation of the community planning policy at all levels.

The community planning process, as Implemented in Michigan, was used
as a case study. State-specific sources of secondary data referenced in this
dissertation include by-Iaws from each of the nine CPGs convened in Michigan,

documents related to recruitment, nomination and selection of CPG membership

75

(e.g., membership applications), demographic profiles of CPG membership,
minutes from meetings of CPGs and their sub—committees, state and regional
prevention plans, documents detailing regional priority setting processes, annual
reports prepared by the state health department for the CDC, and federal
funding applications for HN prevention resources. These documents
comMement those produced at the national level in that they aid in

understanding the local context of community planning.

Informed Consent and Confidentiality

Approval from the University Committee on Research Involving Human
Subjects (UCHRlS), the institutional review board of Michigan State University,
was requested and obtained for this research. All meetings of CPGs are open to
the public. Minutes are taken and distributed to members and interested parties.
Proceedings are a matter of public record. Conferences and similar events
associated with the community planning process are supported with public
funding and, as such, are open to the public. Again, proceedings from
conferences are a matter of public record. Insofar as the community planning
process and associated activities are publicly supported, informed consent was
not deemed necessary for data obtained through participant observation. Where
direct quotations or similar information is used to support or illustrate research

findings, identifying information was omitted from written research findings.

Written, informed consent was obtained, in advance, from each of ten key
consultants interviewed in association with this research. The purpose of the

research and its design were explained, as were the general topics that the

76

interview would address. Informed consent was also explained to each
consultant. Each was told that the interview would be audio-taped, that their
participation was voluntary, and that they could decline to answer questions or
could terminate the interview at any time. Each consultant was provided with a
copy of the research proposal, the interview guide, and information on how to
contact me should they have questions or concerns subsequent to the
conclusion of the interview. Each consultant was also asked for permission to
include identifying information with reports of this research. Finally, each
consultant was invited to review drafts of relevant sections of the research report
and provide comments, clarification or corrections. All of the consultants agreed

to participate fully in the interview and none declined to be audio-taped.

l maintained all field notes generated in association with participant-
observation activities in a locked filing cabinet located in my office. Identifying
information was omitted from these notes. Signed statements of informed
consent and transcriptions of key consultant interviews are also kept in a locked
filing cabinet Electronic copies of field notes and interview transcripts are

maintained on diskette, accessible only by me, via protected password.

Summary

In this chapter, I have described the methods used to conduct my
research. My dual role of researcher and staff of the health department was
discussed, with an emphasis on the implications for data collection and analysis.
In the next chapter, I will provide an overview of the epidemic and the social and

historical context for the community planning.

77

CHAPTER 4
SOCIAL AND HISTORICAL CONTEXT FOR COMMUNITY PLANNING
Introduction
In this chapter I address the social and historical context of community

planning. First, I provide a brief overview of the impact of the epidemic,
nationally and in Michigan. I then trace the policy response at both the state and
federal levels, over time, beginning with the emergence of HNIAIDS in the early
part of the 1980s up through the time that community planning was implemented

in an effort to provide a historical, political and social context for the policy

response.

Epidemiological Overview

Acquired Immune Deficiency Syndrome (AIDS) is a health condition
defined by the presence of one or more AIDS-defining disease and/or laboratory
measured immune suppression, in association with a laboratory-confinned
infection with human immunodeficiency virus (HIV) (CDC 1992; CDC 1995). HIV
infection is acquired through contact with HIV-infected blood and body fluids
such as semen and breast milk. Behavioral transmission, via sexual and drug
using activities, is the primary means for acquiring HIV infection in the United
States and most developed countries. In the U.S., acquiring HIV infection
through transfusion of blood and blood products is relatively rare due to

screening and treatment of the blood supply.

An estimated 4.9 million new HIV infections and 3.1 million AIDS deaths
occurred during 2004 worldwide, bringing the total of persons infected with HN

78

to 39.4 million. There have been a cumulative total of 31 million deaths since the
beginning of the epidemic. About three-quarters of new cases and deaths
occurred in Sub-Saharan Africa (Joint UN Programme on HIV/AIDS: 2004).

In the US. by the end of 2003, nearly one million cases of AIDS‘ had
been reported to the CDC. The CDC estimates that there are currently 900,000
individuals in the US. who are living with HIV infection or who have AIDS, and
that each year 40,000 more infections occur (CDC 2001). The vast majority
(81%) of cases occur among men. In terms of mode of transmission, 50 percent
occurred in men who reported sexual contact with other men, 24 percent
occurred among individuals who reported injection of illegal dmgs and 12
percent occurred among individuals who reported heterosexual activity with a
partner at risk. Wrth respect to race and ethnicity, 41 percent of all cases
occurred among white, non-Hispanic individuals, while 39 percent occurred
among black, non-Hispanic persons, and 18% occurred among Hispanic
individuals (CDC 2003).

By the end of 2005, a cumulative total of 13,248 cases of AIDS was
reported by Michigan to the CDC. The Michigan Department of Community
Health estimates that there are 16,200 individuals In Michigan who are living with

HIV infection or who have AIDS, and that each year 900 new infections occur in

 

1'I'hisfigureisbasedonoasereportsfrom30areasoftheUSwithconfidential, name-based
reporting ofAlDS and HN. Casesassociatedwith individualswhoweretestedforHleithout
glving their name (anonymous testing) are not included. Cases from states that do not conduct
name-based reporting are not included. Thus, this figure under-represents the total number of

individuals who have HIV orAlDS.

79

Michigan residents (MDCH:2004a). The majority (77%) of cases occurred
among men. Wrth respect to transmission mode, 51 percent occurred in men
who reported sexual contact with other men, 14 percent occurred among
individuals who reported injection of illegal drugs, and 24 percent occurred
among heterosexual individuals. Among all Michigan residents living with
HNIAIDS, 58 percent occurred among black, non-Hispanic persons, 36 percent
occurred among white, non-Hispanic individuals and 4 percent occuned among
Hispanic persons (MDCH: 2005).

In Michigan, the epidemic disproportionately impacts black/African
Americans who represent only 14 percent of the general population, but account
for the majority of all reported cases of HN and AIDS. The epidemic is
disproportionately distributed geographically in Michigan. Ninety percent of all
cases of HIV and AIDS are reported from just 15 of Michigan's 83 counties,
which combined, account for 62 percent of the state’s population. These
counties are located along three interstate highway corridors and include
relatively large urban areas. Forty-two percent of the state’s population resides
in the six counties (Wayne, Oakland, Macomb, Monroe, Lapeer, St Clair)
representing the Detroit Metropolitan Statistical Area. Sixty-eight percent of all
cases of HIV and AIDS occur in these counties (MDCH 2004b).

The Emerging Epidemic

The US. Centers for Disease Control and Prevention (CDC) published
the first official report of HIV/AIDS on June 5, 1981 in the Morbidity and Mortality
Weekly Report (MMWR). The article, 'Pneumocystis pneumonia - Los Angeles,”

80

described five cases of pneumocystis eerinii pneumonia (PCP) occurring among
men (CDC 1981a). The appearance of PCP among individuals without any other
clinical indications of immune suppression was highly unusual. Of additional
interest was the fact that all five cases occurred among men who self-identified
as homosexual:

The fact that these patients were all homosexuals suggests an

association between some aspects of the homosexual lifestyle or

disease acquired through sexual contact (CDC 1981az251).

One month later, the CDC published an article entitled “Kaposi’s Sarcoma
and Pneumocystis Pneumonia Among Homosexual Men - New York City and
Califomia" (CDC 1981b). This article described 26 men with Kaposi’s sarcoma
(KS). Four of these men also had PCP or other severe illnesses including
candidiasis, meningitis and toxoplasmosis. The article noted that all 26 men
were homosexual:

The occurrence of this number of KS cases during a 30-month

period among young, homosexual men is considered highly

unusual... No previous association between KS and sexual

preference has been reported (CDC 1981bz305).

This article also described ten new cases of PCP among homosexual men in
San Francisco:

That 10 new cases of Pneumoncystis have been identified in

homosexual men suggests that the 5 previously reported cases

were not an isolated phenomenon... It is not clear if or how the

clustering of KS, pneumocystis and other serious diseases in

homosexual men is related (1981bz305).

By late 1981, scientists began to refer to the emerging disease as gay-related
immune deficiency (GRID) while the general public began to speak of “gay

cancer’ (Shilts 1987:152).

81

By 1982, the CDC reported the new disease as beginning to gain a
foothold among Haitians living in the United States (CDC 1982b). Thirty-four
Haitians had been diagnosed with opportunistic infections like those afflicting gay
men. Later that year, came reports of the new disease affecting hemophiliaes
and “heroin users” (CDC 1982c). Thus, the new disease affected the so-called
‘4-Hs' - homosexuals, Haitians, hemophiliaes, and heroin users. Categorizing
risk in this way was highly stigmatizing and resulted in widespread discrimination,
particularly of gay men and Haitians (Shilts 1987; Farmer 1999; Singer 1995).
Once it was discovered that HIV was the causative agent for AIDS in 1984, the
CDC replaced GRID with Acquired Immune Deficiency Syndrome (AIDS), in an
attempt to de-stigmatize the disease in order to combat this discrimination. The
name was intended to be neutral with regard to sexual orientation, ethnicity or
other such characteristics (Shilts 1987).

Early Policy Response

Since the emergence of the epidemic, AIDS has become a major concern
in many areas of public policy in the United States. Certainly, health-related
policy has been influenced by AIDS. The advent of AIDS resulted in sweeping
policy changes that improved the safety of the nation’s blood supply and
streamlined the process for approval of drugs and medical devices. AIDS has
influenced public education policy, particularly how and what youth are taught
about sexuality and prevention of sexually transmitted diseases, including HIV.
AIDS has such broad reaching implications for our society: it is an important

consideration in the economy, labor regulations, discrimination law, civil rights,

82

immigration, and human rights policies, both here and abroad. AIDS has even
figured prominently in national security policy, with the global AIDS pandemic

being declared a threat to national security under the Clinton administration.

For the first decade of the epidemic, the direction of AIDS policy was
formulated largely by politicians and medical administrators rather than public
health practitioners and social scientists. This was the result of the political and
moral conservativism of the Reagan and George H.W. Bush administrations, and
the massive and widespread stigma associated with HIV/AIDS, and those most
affected by it. Endorsing programs that were science-based, such as condom
use for sex and use of clean needles for injecting dmgs was, for the White
House, tantamount to endorsing sex outside of marriage, sex for purposes other
than procreafion, homosexual behavior, and drug use (Koop 1991, Melody
1994). As a result, early policies on HIV/AIDS reflected political considerations
instead of scientifically produced evidence. For example, public policy has
prevented widespread implementation of needle exchange programs due to the
perception, notably among political conservatives, that such programs would
promote drug abuse. Immigration rules were implemented that mandated HIV
testing for all applicants seeking permanent residence in an attempt to control
the spread of the disease by excluding HIV-infected persons from entry into the
United States.

The community planning initiative represents a radical departure to policy
making, in that it attempts to shift the basis for policy formulation and
implementation away from the realm of politics and a biomedical approach and

83

toward an approach based on social science and public health. The trigger for
this shift in paradigm was the 1992 election of President Clinton. Under his
administration, the federal government took a much more moderate approach to
social issues and embraced the use of empirically derived data and scientific
knowledge in the formulation of public policy. To understand why community
planning is such an important approach to policy reforrrr, it is important to place it

within a social and historical context.

The Federal Response. AIDS emerged during the so-called “Reagan
Revolution,” during which our country was experiencing a radical shift in the
distribution of wealth, accompanied by a massive de—funding of social programs
that benefitted the poor and middle class. During this period there was an
enormous increase in the wealth of the richest Americans. Simultaneously, the
poorest Americen’s became even poorer. This redistribution of wealth was the
result of federal policies. Specifically, federal tax policies designed to benefit the
wealthy and corporations were implemented. AIDS emerged during the height of
the Cold War, and thus other policies from this administration resulted in a shift
of funding from social programs and into massively increased defense spending,
which further benefitted corporations while simultaneously placing a greater
strain on the resources of poor and middle-class Americans (Phillips 1990).

Federal policy shifted responsibility for health and social concerns to state
and local governments and concurrently reduced federal funding to state and
local governments. The overriding theme of these changes was to foster a
“culture of character,” wherein health and social problems were blamed on

34

ignorance and bad choices. Health and social policy formulated during this are
placed priority on individual responsibility in maintaining and improving health
status (Quam 1994). This philosophy is clearly reflected in early AIDS policy,
particularty that associated with health education and prevention efforts.

In January of 1986, US. Surgeon General C. Everett Koop prepared a
report on AIDS, at President Reagan’s behest. The report called for widespread
dissemination of explicit information about the modes of transmission of HIV and
methods for prevention. The report also called for distribution of condoms.

Koop also concluded that mandatory testing and quarantine would be useless in
fighting the disease. Koop (1991:204) was aware that, '[a] large portion of the
President's constituency was anti—homosexual, anti-drug abuse, anti-promiscuity,
and anti-sex education; these people would not respond well to some of the

things...said in a health report on AIDS.”

Koop knew that the White House would never endorse the release of a
report which presented recommendations so completely contrary to the
conservative values that it espoused. For this reason, Koop took the highly
unusual step of printing and distributing the report to 20 million American
households without having either the White House or officials within the
Department of Health and Human Services review it. No action was taken by the
Reagan administration on any of the recommendations included in the report.
However, the report did result in a large wave of media attention to HIV/AIDS,
and through It, the federal government's actions (or lack thereof) to combat the
epidemic.

85

Due to the media attention garnered by the report, President Reagan was
forced to bow to public pressure and convene an expert panel to develOp a
national policy on AIDS. The result was the appointment of a Presidential
Commission on AIDS. Among the members of the Commission were
academics and physicians, heads of corporations, one retired miliary officer, and
various religious leaders. The Commission included only one minority and one
gay man. None had experience with HIV/AIDS, and all had ties to the White
House, either as contributors to Republican campaigns or as personal friends of

the President or his advisers (Kahn 1993:102-104).

The report issued in 1988 by the first Presidential Commission on the HN
Epidemic outlined 579 specific recommendations for combating the AIDS
epidemic, including expanding access to and support of drug treatment,
promotion of voluntary HIV testing, and enacting legislation to prevent
discrimination on the basis of HIV infection status (Presidential Commission on
the HN Epidemic: 1988). The recommendations included in the report were
based on careful research and consultation with experts in medicine, public
health, social science, as well as community leaders. The Reagan
administration took no action on this report Instead, each of the federal
agencies with some responsibility for HIV/AIDS developed separate plans and
policies related to HIV, resulting both in duplication of effort as well as conflicting

agendas.

The 1988 Congressional appropriation language for CDC funding
specified the specific uses of funding eannarked for HIV. In addition to

86

supporting disease surveillance and testing activities, education and other
prevention activities were to be supported with federal funds. The appropriation _
language, however, gave very specific parameters regarding the content of
education and prevention activities:

..AIDS education programs that receive assistance from the

Centers from Disease Control and other educational curricula

dealing with sexual activity that receive assistance under this Act:

(1) shall not be designed to promote or encourage, directly,

intravenous drug abuse or sexual activity, homosexual or

heterosexual; and (2) with regard to AIDS education programs and

curricula shall be designed to reduce exposure to and transmission

of the etiologic agent...and shall provide information on the health

risks of promiscuous sexual activity and intravenous drug use...(PL

100-607: Section 204).
This Act is colloquially referred to as the “no homo promo“ Act, and is still in
effect today. The result of this language is to greatly restrict the ability of public
health agencies to appropriately serve those populations most impacted by the
epidemic. Along with these content restrictions, this Act directed the CDC, in
making grants to state and territorial health departments, to devote 65 percent of
federal funds to HIV testing and partner notification activities, further
hamstringing the ability of public health agencies to implement effective HIV

prevention efforts.

Michigan’s Response. The political environment in Michigan at the time that
AIDS emerged was markedly different from that of the national level. In 1986,
Governor James Blanchard authorized, by Executive Order, the establishment of
a Special Office on AIDS Prevention (SOAP) within the state health department.
Governor Blanchard was a Democrat, and was characterized as fairly liberal with

respect to social policies and programs. He quidrly recognized the potential

87

social and economic impact of the growing epidemic on Michigan, and
acknowledged the relative inaction on the part of the Federal government in

aggressively addressing the burgeoning epidemic.

The Special Office on AIDS Prevention was charged with developing state
policy on HNIAIDS, coordinating surveillance efforts, and implementing public
information and health education programs. Due to the fact that there was no
vaccine or other effective medical interventions at the time the Special Office on
AIDS Prevention was established and owing to the strong behavioral and social
features associated with HIV transmission, SOAP was organizationally situated
within the Center for Health Promotion and Disease Prevention (CHPDP), along
with chronic disease programs such as cardiovascular disease and diabetes
instead of in Infectious Disease Control, which had responsibility for infectious
and communicable disease programs such as tuberculosis and sexually
transmitted diseases. It was felt that CHPDP possessed the necessary expertise
and experience to develop and coordinate an appmpriate, evidence-based

prevention effort

Many other state health departments, viewing HNIAIDS as another
sexually transmitted disease, had simply expanded existing sexually transmitted
disease programs. Such programs emphasized case finding and contact tracing,
the traditional public health prevention strategies used with infectious diseases,
rather than social and behavioral interventions to prevent transmission. The
decision to place SOAP within CHPDP is important because this influenced the
direction and philosophy of HNIAIDS program efforts. Instead of emphasizing

88

traditional disease intervention practices used by public health agencies in
combating infectious diseases, including aggressive contact tracing, early
prevention efforts implemented by SOAP emphasized public information, health
education, and voluntary HIV testing. Given that there were no effective
treatments for AIDS at that time, it was important to focus program efforts on
preventing transmission and combating stigma. Health department leadership at
that time was supportive of a broad range of prevention strategies (Including
some that were prohibited by federal policy or statute). For example, the
administration supported comprehensive sexuality and disease prevention
education for school-aged youth. As a result, developmentally appropriate
HNIAIDS prevention education was provided in grades K-12 in all of Michigan’s
public schools.

The decision regarding leadership for the newly established program is
also important. In establishing SOAP, Governor Blanchard relied on the
expertise of his department heads and left all decisions regarding the program
leadership, staffing and program direction entirely in the hands of the Michigan
Department of Public Health. The Chief of the newly created SOAP office was
chosen by the Director of CHPDP. The individual selected to lead the program
had substantial experience in working in both chronic and infech'ous disease
programs at the county, state, national and lntemational levels. He began his
career as a disease intervention specialist with a county syphilis elimination
program, managed sexually transmitted disease programs at both the state and
federal levels, managed the CDC’s smallpox eradication effort in India and

89

managed several chronic disease programs at the state and federal levels. He
had experience and a high level of comfort and cultural competence in working
with diverse populations. Most importantly, he had an appreciation for the value
of developing partnerships with communities served by public health programs
as well as with organizations providing health and social service to these
communities. As a result, partnerships were established between the state
health department and a variety of organizations including advocacy
organizations for the gay/lesbian community, civil rights organizations, along with
advocacy organizations serving women, youth, disabled, homeless and other
disenfranchised populations. They were important in the development of public
policy and designing and implementing prevention programs. These
partnerships ensured that the state health department was among the first in the
nation to fund community-based and other non-governmental organizations in

order to provide HN testing and other prevention programs.

The federal political environment for HNIAIDS prevention changed
dramatically with the 1992 election of Bill Clinton, who indicated his commitment
to HIV/AIDS programs in his inaugural address. Wrtlrin weeks of beginning his
first term, President Clinton established the Office of National AIDS Policy
(ONAP) and appointed Kristine Gebbe as the first ever “AIDS czar.” She was
charged with developing federal AIDS policy and coordinating federal agencies
in their HNIAIDS-related activities. Key health policy makers in the Clinton
administration consistently acknowledged HIV/AIDS as a national health priority,

and most notable and visible among them was Joycelyn Elders who used her

90

position of Surgeon General as a bully pulpit on AIDS. Health and Human
Services Secretary Donna Shalala and Philip Lee, the assistant secretary for
health, were also strong supporters of HIV/AIDS issues. Clinton's approach to
the epidemic was notably different fi'om that of his predecessors. He made his
commitment to combating HIV/AIDS highly visible'by establishing ONAP. He
also made policy based upon of a wide variety of evidence, and consulted with a
range of scientific advisers. Individual departments within the federal
gevemment, instead of being constrained by policy, were consulted in policy
development and expected to implement programming infenned by sound

scientific evidence.

Michigan was in a decade long recession by the end of the 1980s, owing
to the declining sales of American automobiles, the bedrock of Michigan’s
economy. As a result of the poor economic climate, Michigan voters elected
John Engler (Republican) in 1990. His election ushered in a decade's worth of
“downsizing” of the state government through privatization of some government
programs and the dismantling of social welfare programs. This change in
administration had a direct and substantial impact on the state health
department, including the HIV/AIDS program. A massive restructuring of the
health department was undertaken early in the Engler administration, the details
of which are beyond the scope of this dissertation. The HIV/AIDS program was,
however, affected by this restructuring in that it was transferred from CHPDP to
the Bureau of Infectious Disease Control (BIDC), where there was markedly less
appreciation for, and understanding of, health education and disease prevention

91

programs. The new health director, James Haveman, who was appointed by
Gevemor Engler, had no medical training and had no public health experience.
Further, his personal values and views, markedly conservative, were brought to
bear on all public health programs. His policies were based on moral and
political views, rather than on any scientific evidence, and they resulted in the
HNIAIDS program (renamed the HIV/AIDS Prevention and Intervention Section
or HAPIS), having to discontinue support for programs such as comprehensive
sexuality education for school-age youth, and needle-exchange programs.
Public information efforts, such as public service announcements that frankly
discussed sexual behavior, including condom use, were also discontinued.2
Thus, the progressive programming and aggressive prevention efforts that
Michigan had initiated early in the epidemic were greatly constrained or ended.

Policy Reform

Shortly after President Clinton took office, in early 1993, three concurrent
efforts at national HIV prevention policy reform were initiated. The convergence
of these reform efforts was directly responsible for the community planning
initiative. The first of these three efforts was the External Review of CDC’s HIV
prevention strategie3. A series of committees comprised of “experts,” external to
the CDC, were convened to assess CDC’s HN prevention strategies. In general,

the External Review found that CDC’s prevention efforts lacked an appropriate

 

ZT'IresepoliciesoftenmadeltdilficultfortheMDCHteberesponsivetothepreventlonpriorities
Identified tlrreugh the community planning process. It is notable that the new health department
director attempted to dismantle the community planning process, at one point demanding that the
SCPG bedisbanded, apparently in responseto having beenchalbnged bytlratbodyaboutthe
policy for abstinence-only education for school-aged yeutlr.

92

scientific base, were not adequately targeted, were insufficiently coordinated with
other federal efforts, and lacked input from key stakeholders (CDC 1994). In
short, federal policy, based upon political sentiment rather than science, had

critically undermined HIV prevention efforts.

Public health officials had long been frustrated with the lack of federal
leadership in HIV prevention efforts and with restrictive funding policies.
Through a collaboration between the Association of State and Territorial Health
Officers (ASTHO), the National Alliance of State and Territorial AIDS Directors
(NASTAD) and the Council of State and Territorial Epidemiologists (CSTE), the
State Health Agency Vision for HIV Prevention was developed (ASTHO, et al.
1993). This document was distributed to all state health agencies, the CDC, and
to the Secretary of Health and Human Services. The document reinforced many
of the conclusions of the CDC External Review. Collaboration across all sectors
and levels of government was particularty emphasized. The importance of input
from representatives of affected populations into programming, was highlighted
as essential to ensuring effective HIV prevention efforts.

Finally, in March of 1993, Representative Nancy Pelosi introduced the
Comprehensive HIV Prevention Act of 1993. In addition to mandating
coordination among federal agencies, this bill mandated that each state convene
a planning council for the purpose of making recommendations on:

Priorities for the allocation with the State of funds. A

comprehensive plan for caan out HN community-based

activities in the State...[and] assessing the efficiency of entities in

carrying out such activities... [planning councils are to] include
representatives of the following entities: state or local public health

93

agencies, state or local agencies providing treatment for substance

abuse...state or local agencies that administer correctional

facilities...epidemiologists, behavioral scientists, providers of mental

health services, community-based organizations that carry out

activities or services related to HIV... individuals with HIV infection

[and] communities with significant number of at-risk individuals (US

Congress 1993:Sec.2532).
Representative Pelosi withdrew this bill when it became clear that the CDC
intended, through policy, to address the principles that the bill embodied, i.e.,
involvement of a variety of stakeholders, especially HIV-infected individuals and
representatives of communities impacted by HIV, in planning for HIV prevention
programming. While no action was ever taken on this bill, it, along with the other
two documents referenced earlier, became the principal sources for

development of the community planning initiative.

In late 1993, the CDC issued Supplemental Guidance on HIV Prevention
Community Planning for Noncompeting Continuation of Cooperative Agreements
for HIV Prevention Projects. Implementation of the Guidance is a condition of
federal funding associated with grant awards to state and territorial health
departments. The Guidance required that each health department implement
and sustain a community-based planning process to inferrn HIV prevention
efforts, the specific parameters of which are delineated. A statewide plan to
guide HIV prevention efforts was the expected product of this process. The CDC
required that state health departments distribute federal HIV prevention funds in
accordance with tlrese plans.

The central tenant of community planning is the inclusion of
representatives of pepulations affected by AIDS (e.g., injecting drug users) in the

94

process of planning for HIV prevention efforts. Specifically, each state was to
convene an advisory group, referred to as “community planning groups” (CPGs),
to develop the statewide prevention plan. According to the Guidance,
The HIV prevention community planning process must include
representatives who reflect the population characteristics of the
current and projected HIV/AIDS epidemic in that jurisdiction... in
terms of age, gender, race/ethnicity, socioeconomic status,
geographic distribution... sexual orientation and HIV exposure
category... (CDC 1993z8).
The Guidance also required CPGs to include HIV prevention service providers,
epidemiologists, social scientists, health planners, and evaluators in their

membership.

The community planning initiative represents a major paradigm shift in
public policy. It emerged in the context of a shift away from moral
conservativism and toward a more moderate approach to social issues that
characterized the Clinton administration. Scientific knowledge and diversity of
opinion was valued in the formulation of public policy in the Clinton
administration, whereas ideology was more influential in shaping policy under the
two prewding administrations.

Community planning for HN prevention required, to a significant extent,
the direct input and participation of “consumers“ of HIV prevention services.
Until the introduction of the community planning initiative, HIV/AIDS policy at the
federal level, had been developed almost entirely by the White House and
Congress without substantive input from health professionals or the scientific
community. Importantly, federal HNIAIDS policy formulation lacked input from

95

the individuals and communities most impacted by the epidemic. The level and
depth of participation was unprecedented in health policy planning at the federal
level. Emergence of this initiative can be understood in part as a reaction to

regressive federal policy.

Emergence of Community in AIDS Policy

The concept of community is particularly relevant to public health policy
related to HIV/AIDS. AIDS emerged into the public awareness during the
Reagan administration. Cost containment and a shift away from a social welfare
state characterized that administration’s approach to health policy. From an
economic perspective, the Reagan administration appeared reluctant to
recognize the tremendous costs associated with dealing \m'th an emerging
epidemic (Fee and Fox 1992). The reluctance of the Reagan, and then the
George H.W. Bush administrations to respond to the burgeoning epidemic was
also related to the moral conservatism which characterized those
administrations. AIDS impacted populations which were scale—economically
marginalized, highly stigmatized, and widely discriminated against (i.e., gay men,
injecting drug users, commercial sex workers and racial/ethnic minorities).
Funding programs targeted specifically to these pepulations was perceived within
the administration, to be tantamount to endorsing homosexuality and condoning

drug use.

The first responses to AIDS in this country came, in the early 19808, from
the gay community. This community was able to mobilize relatively quickly and
effectively, because two decades of organized effort to promote the civil and

96

human rights of gay people resulted in a well-organized structure for political
action. Gay men and lesbians rapidly established mechanisms to share
information about the new disease; developed educational campaigns to prevent
more people from acquiring the disease; implemented support networks; and
lobbied the federal govemment and the medical establishment to implement
prevention efforts, develop effective treatments, and promote care for all those
impacted by AIDS.

Recognizing the lack of political will, particularly at the level of the federal
gevemment, to aggressively address the emerging epidemic, the gay
community also demanded a “voice“ in policy development and decision-making.
This was formally articulated in a document that has become known as the
“Denver Principles.“ The Denver Principles state that:

[People with AIDS should] be involved at every level of decision-

making...with equal credibility as other participants, to share their

own experiences and knowledge (Callen 1983z1).

Similar responses did not rapidly emerge from other populations impacted by the
epidemic because these populations (e.g., injecting drug users) lacked similar

preexisting networks and organizations upon which to build (Altman 1994).

The community-based approach to HIV/AIDS enacted by the gay
community early in the epidemic, provided the federal government with a
relatively cost-beneficial approach to public policy. This community mobilized
and brought to bear its own resources on the problem, and in this way was
commtible with a federal emphasis on cost-containment in health care. The

strong community-based response also relieved the government of responsibility

97

for developing its own policy on AIDS.

Michigan’s initial policy and programmatic response to the emerging
epidemic was progressive, particularly in comparison to the federal response.
Leadership in the executive and legislative branches of gevemment, as well as in
the state health department, ensured both a rapid and rational response to
HIV/AIDS. Further, engagement of communities impacted by the epidemic was
actively sought by public health officials, who viewed the knowledge, opinions
and experiences of impacted communities as essential to the development of
sound policies and effective programming. Community engagement was an

essential step in the development of policy and programming.

A relatively slow and anemic response by the federal gevemment forced a
community-based response to the epidemic, probably because community
mobilization in addressing the needs of those infected and impacted by the
epidemic relieved the federal gevemment of its responsibility for a response. At
the same time, Michigan witnessed a relatively progressive response to the
epidemic at the level of state government The state governments response
was guided by the knowledge and experience of communities impacted by the
epidemic, and relied substantially on community leaders and community-based
organizations to deliver HNIAIDS programming. In this way, a community-based
response to HIV/AIDS was prompted and cultivated in Michigan. Community-
based involvement and engagement continues to be a key principle in the
formulation of HIV/AIDS policy. The federal policy initiative of community

planr ' prevention is the most significant embodiment of this principle.

98

Summary

In this chapter I provided a basic overview of the impact of the epidemic.
The bulk of the chapter addressed the historical, social, and political factors
associated with HIV/AIDS public policy in the United States. Consideration of
these factors is essential to gaining a fuller understanding of how the community
planning initiative came into being, and why the concept of community is so
prominent in HNIAIDS policy. In the next chapter I will address the setting for
my research, including a discussion of research sites, some of which are
conceptual rather than physical. The planning process, as it is structured and
implemented in Michigan will be described.

99

CHAPTER 5
THE RESEARCH SETTING
Introduction
This chapter will address the setting for my research. Specifically, I will
describe multiple sites that are conceptual rather than physical, because my
research concerns policy. Emphasis will be placed upon descriptions of
Michigan specific sites. I will also describe the planning process as it occurs at

the federal, state, and regional levels.

The Federal Level - The Centers for Disease Control

Headquartered in Atlanta, Georgia, the Centers for Disease Control and
Prevention (CDC) is an agency of the US. Department of Health and Human
Services. The CDC was established in 1946 as the Communicable Disease
Center. This agency grew out of the Malarial Control in War Areas (MCWA)
office which had been successful in keeping the southeastern states malaria free
during World War II. The mission of the new agency was to monitor and control
all infectious diseases across the US. In this way, disease surveillance and
epidemiology became (and continues to be) the core of the agency’s mission.
By the 19708, CDC expanded its efforts beyond communicable diseases, and
with this expanded its role into public health internationally. The agency was
renamed the Centers for Disease Control to reflect its expanded scope and
roles. The CDC has continued to expand its scope of interest and its
responsibilities with more emphasis being placed on prevention, and in 1992, the

CDC was renamed the Centers for Disease Control and Prevention (retaining the

100

acronym CDC). Today, the CDC has over 9,000 employees working throughout
the US. in hospitals, and state and local health departments, and has deployed
over 1,000 additional employees to countries around the globe. It is considered

one of the world’s premier health agencies.3

Responsibility for federal HIV/AIDS prevention programs falls within the
National Center for HIV, STD, and TB Prevention (NCHSTP), one of 12 such
centers that make up the CDC. More specifically, HIV/AIDS prevention efforts
are administered and coordinated through the Division of HIV/AIDS Prevention

(DHAP). An organizational chart for DHAP appears in Appendix B.

The CDC provides funding to state, city, and territorial health
departments, nen-govemmental organizations, and community-based
organizations to develop and support HIV/AIDS prevention services and related
activities (e.g., community planning, and training and education for service
providers). In general, the CDC has the authority to determine priorities for its
programming and funding as well as those of the agencies that it funds.
However, Congress determines CDC’s funding through its annual appropriations
process, and it is within the Congressional purview to be directive about how
funds are or are not used. Such has been the case with funding for HIV/AIDS

prevention, as was discussed in Chapter Four.

While the CDC is not a regulatory agency, it does have the authority and

 

3For a comprehensive history of the CDC, including its successes and failures, the reader is
encouraged to consult a book entitled Sentinel for Health: A History of the Centers for Disease
Control by Elizabeth Etheridge (University of California Press, 1992).

101

responsibility to conduct oversight and monitoring of the agencies and programs
that it funds. For health department HIV/AIDS prevention programs, this was
accomplished primarily through bi-annual progress reports that detailed progress
toward meeting program objectives, quantified prevention services provided, and
described training and education of service providers, coordination with related
programs (e.g., substance abuse, sexually transmitted diseases), and quality
assurance activities, as well as program monitoring and evaluation efforts. With
the implementation of community planning, these progress reports focused
substantially on the community planning process, specifically the extent of the

health department compliance with the federal guidance on community planning.

The CDC, through DHAP/NCHSTP, developed the guidance on
community planning, and implemented this national-level initiative via state
health departments, making its implementation a condition of continued funding.
CDC demonstrated a strong commitment to this initiative. Leadership for this
initiative came from a handful of individuals in key leadership positions within
NCHSTP. The Deputy Director of NCHSTP, in particular, was an early and
strong proponent of community planning:

There were two major themes. which influenced the development of

community planning. First, prevention requires planning and,

second, affected communities should be invelved....The architects

of community planning had three overarching objectives: improving

the targeting of prevention programs, promoting cultural

competence, and strengthening the science base of programs.

These objectives lead to the goal of strong, effective HIV

prevention services. Commitment and passion alone won’t do it.
We need to many those two things with a science base.

In 1994, the CDC also provided health departments with funding earmarked to

102

support planning efforts, and invested significant resources in the development
of a network of national non-governmental and advocacy organizations to

provide technical assistance in support of the planning process.‘

The State Level - Michigan

Michigan served as the primary site for my field research. The two
peninsulas which comprise Michigan encompass 58,527 square miles and are
surrounded by four of the five Great Lakes (Because the lower peninsula is
shaped like a mitten, Michiganders find it convenient to use their hands as a
makeshift map of the state). At the time of the 2000 Census, Michigan had
9,938,444 residents, which ranked the state eighth among all 50 states in terms
of total population. Eighty percent of Michigan’s residents are white and 14
percent are black or African American. Three percent reported their ethnicity as
Hispanic or Latino, an increase of seven percent since 1990 (US. Bureau of the

Census).

During the period of my field research, Michigan’s economy was relatively
strong and Michiganders were relatively prosperous. Slightly fewer than four
percent of Michiganders were unemployed and the median household income
was nearly $45,000 (US. Bureau of the Census). Michigan’s economy is heavily
dependent upon manufacturing, particularly in association with the automobile

industry and service industries, which makes Michigan particularly economically

 

4CDC has not been able to provide a figure for resources expended in support of the community
planning effort because they did not have an administrative mechanism to reliably track such
expenditures. Michigan annually expended approximately $500,000 to support community
planning.

103

vulnerable during times of national recession. Agriculture continues to be an
important component of the state’s economy, and Michigan is a leading producer
of cherries, grapes, apples, beans, and blueberries (US. Department of Labor,

Bureau of Labor Statistics).

The Michigan Department of Community Health (MDCH) administers a
broad range of health and human service programs, and it has responsibility for
HIV/AIDS prevention programs in Michigan. More specifically, HIV/AIDS
prevention efforts were administered and coordinated through the Special Office
on AIDS Prevention, which was renamed the HIV/AIDS Prevention and
Intervention Section (HAPIS) during the course of this field work. The change in
the name of the office accompanied a reorganization which moved the HIV/AIDS
prevention program into the Bureau of Infectious Disease from the Center for

Health Promotion and Disease Prevention.

The MDCH, through HAPIS, funds county/city health departments, non-
governmental organizations, and community—based organizations to provide
HIV/AIDS prevention services and related activities such as training and
education for service providers. While the MDCH does have fairly broad
authority to determine priorities for programming and funding, it must do so in the
context of the state Public Health Code, as well as requirements associated with
all funding that it receives from federal agencies. Michigan’s code contains
some very specific language related to HIV/AIDS. Much of the language in the
code relates to disease reporting requirements, informed consent for HIV

antibody testing, and confidentiality protections for individuals diagnosed with

104

HIV/AIDS. One part of the code, pertains to the creation of the Michigan Health
Initiative Program (MHI), which established a funding mechanism to support
public health programs that address preventable diseases, including HIV/AIDS.
The MDCH administers this program. Wrth respect to HIV/AIDS, the MHI
requires that the department support HIV testing and counseling to ensure that
Michigan residents can obtain these services free of charge, establish a
clearinghouse for HIV/AIDS information, and conduct a ongoing media
campaign. The MHI also requires that MDCH “give priority“ to adolescents in
programming supported with MHI funding (MCL 333.5901 - 333.5921). These

services then, must be included within the “portfolio” of prevention activities,

regardless of priorities identified through the community planning process.

While the MDCH is not a regulatory agency, it does have the authority and
responsibility to conduct oversight and monitoring of the agencies and programs
that it funds. For HIV/AIDS prevention grantees, this is accomplished primarily
through quarterly progress reports that detailed progress toward meeting
program objectives, and prevention services provided quantified in terms of

populations reached, and types of interventions implemented.

The MDCH does not provide HIV/AIDS prevention services directly to
clients. Rather MDCH develops program standards, funds local health
departments, community based organizations (CBOs) and non-governmental
organizations (NGOs) which deliver HIV prevention services, provides training
and education to providers of HIV/AIDS services, and conducts contract

monitoring, quality assurance and program evaluation. Importantly, the MDCH

105

coordinates and facilitates the community planning process, as a condition of

federal funding.

The Community Planning Process

The federal policy that resulted in community planning is codified in a
document entitled Supplemental Guidance on HIV Prevention Community
Planning for Noncompeting Continuation of Cooperative Agreements for HIV
Prevention Projects, hereafter referred to as “the Guidance.“ The policy on
community planning is implemented by state health departments as a condition

of federal funding for HIV prevention programs.

The Guidance describes the general parameters, requirements, and
expected products of community planning. The core requirement articulated in
the Guidance, is that each state health department convene at least one
advisory body, referred to as a community planning group (CPG), for the
purpose of developing a plan for HIV prevention efforts within the state (i.e., the
prevention plan). Health departments are then expected to allocate federal HIV

prevention resources in accordance with this plan.

Plans are to be “evidence-based” (CDC 199321), meaning that CPGs
must identify at-n'sk populations and their HIV-related needs, based upon an
“epidemiologic profile“ and findings from “needs assessment” activities. The
epidemiologic profile is intended to describe the populations impacted by
HIV/AIDS on the basis of epidemiologic data such as reported cases of HIV

and/or AIDS. “Needs assessments“ are to be undertaken by CPGs for the

106

purpose of identifying “prevention needs,“ i.e., the psychosocial, cultural, or
environmental factors that influence behavioral risk for HIV/AIDS, or act as
barriers to adopting risk reducing strategies. CPGs must select interventions to
address identified needs on the basis of explicit consideration of evidence of
outcome effectiveness, cost and cost-effectiveness, grounding in behavioral or
social science theory, and responsiveness to community norms and values (i.e.,

cultural competence).

CPGs must then prioritize identified populations and prevention
interventions. In effect, the Guidance requires that CPGs assign relative rank to
both populations and interventions. Allocation of federal HIV prevention funding
is expected to follow these priorities, with these populations or interventions

receiving the highest rank granted proportionately more funding.

Evidence, in the context of the Guidance, refers to information obtained
systematically, through epidemiologic and social and/or behavioral research
methods. The importance of basing decisions about priority populations and
prevention interventions on data and information collected through accepted
“scientific“ methodologies (e.g., epidemiology) is emphasized throughout the

Guidance.

Nevertheless, the Guidance also highlights the importance of community
“input” into the planning process. Community planning groups are expected to
incorporate into the planning process “...the views and perspectives of groups at

risk for HIV infection for whom the programs are intended" (CDC 1993z1).

107

According to the Guidance, “Representatives of communities at risk for HIV
infection can provide invaluable'personal and population-specific perspectives on
accessibility and cultural appropriateness of specific prevention interventions“
(CDC 19935). In this way, the Guidance has been interpreted by CPG members
and community advocates as giving equal weight and value to opinion as well as
information collected through methodologies which can be characterized as
“scientific.“ For participants in the community planning process, opinions held by
community representatives are treated as a form of “evidence” to be used in

priority setting and decision making about resource allocation.

In crafting annual applications to the CDC for HIV prevention funding,
health departments are expected to propose activities and interventions that are
consistent with priorities identified in the specific jurisdiction's HIV prevention
plan. To demonstrate responsiveness to the HIV prevention plan, health
departments are required to obtain “letters of concurrence“ from CPGs in
association with annual funding applications. The concurrence process involves
CPGs reviewing its state health department funding application, including the
associated budget, and assessing the extent to which the populations and
activities proposed in the application match the populations and prevention
interventions identified in the prevention plan(s). CPGs can submit letters of
non-concurrence if they find that the application includes activities or
interventions which are not included in prevention plans, or if the health
department application fails to address interventions included in the plan.

Letters of non-concurrence can result in the CDC placing restrictions or

108

conditions on funding awarded to a state health department. In such
circumstances, the CDC can require a health department to redirect funding to
support interventions or activities described in the state’s prevention plan before
it will release funding. Failure to do so can result in loss of funds. Altemately,
the CDC can make release of funding conditional upon the health department
providing justification for deviation from the prevention plan. If health
departments can provide adequate justification for deviation from the plan, the

CDC can then release funding.

The Guidance also provides an outline of the expected procedures for the
structure and operation of CPGs. The Guidance requires that all CPGs be cc-
chaired by a representative of the health department and a community
representative. The latter individual must be elected by the full CPG body. CPG
activities are to be governed by written policies and procedures for deliberation
and decision-making, dispute resolution, and avoidance of conflicts of interest.
CPG membership is to be solicited though an open recruitment and nomination
process. Selection of members is to be guided by formally articulated criteria.
Additional details regarding implementation of these requirements are provided
in a companion document to the Guidance entitled Handbook for HIV Prevention
Community Planning. In general, these guidance documents suggest a structure
and method of operation for CPGs that very closely resembles the structure and
method of operation used by the governing boards of many corporations and
non-profit organizations. Wrth respect to the highly marginalized and

disenfranchised populations most impacted by HNIAIDS, this structure makes

109

their participation in community planning activities challenging, at best. Such a
structure requires that participants have sufficient time and resources to travel to,
and participate in meetings. It also requires that they have sufficient knowledge
and understanding of the purpose and operation of such bodies, and the
parliamentary procedures used to conduct the business of these bodies. This
structure also requires that participants have sufficient literacy and
communication skills which are adequate to enable them to participate with parity

to other members.5

A modest amount of flexibility was extended to health departments with
respect to the structure and methodology for implementation of this policy
initiative. As a result, the characteristics of community planning, such as number
and structure of CPGs within a state, methodologies used to collect data, and
processes used to conduct planning activities, were left to the discretion of state
health departments. Consequently, each of the 65 state, territorial and city
health departments receiving federal funding for HIV prevention conducted

planning differently.

For example, while health departments were required to convene only one
CPG per state, several states, including California, Oregon, Washington, and
Michigan, elected to convene multiple CPGs. California and Oregon initially
convened one planning group in each of their counties. Washington and

Michigan initially convened “regional” CPGs, whereby several counties were

 

5 The extent to which this initiative was successful in involving marginalized and disenfranchised
populations in community planning efforts is addressed in Chapter 8, in the context of discussion
of the contributions of this dissertation research.

110

aggregated into regions, each represented by a single CPG. Some states
elected to engage in an annual planning process, developing a new plan for HIV
prevention each year. Others, including Michigan, elected to implement a multi-
year planning cycle. Some states elected to combine the HIV planning process

with similar planning processes associated with HIV/AIDS care and treatment.

The particular “flavor“ that community planning takes on in each
jurisdiction is mediated by a number of factors, including state capacity to
implement required processes, resources to support planning efforts, historical
relationships between the health department and communities impacted by HIV,

and the demographics of the epidemic.

Michigan’s state health department decided to implement a “regional”
model for HIV prevention planning. According to senior officials within the state’s
HIV/AIDS prevention program, the rationale for this approach was to localize
planning efforts as much as possible, while simultaneously ensuring that
planning efforts were administratively manageable and cost-efficient.‘3 The state
was divided into eight HIV planning regions. At the time of this research,
Michigan's 83 counties were aggregated into 48 local public health jurisdictions,
with some jurisdictions encompassing multiple counties. The borders of each
planning region maintained existing boundaries of local public health entities. A

map of Michigan, with the eight planning regions indicated, is provided in

 

° Subsequent to the completion of field research, the HNIAIDS program undenlvent a program
audit conducted by the State’s Auditor General in 2000. One of the findings of this audit was
that the regional planning structure resulted in unnecessary redundancies in planning activities
and that it would be more cost effective to collapse the regional configuration into a single
statewide planning process. Since 2001, Michigan has conducted community planning activities
with a single statewide CPG, the Michigan HIV/AIDS Council.

111

Appendix C.

A county health department within each planning region was charged with
facilitating the planning process, pursuant to Federal guidance, including
convening at least one CPG. Each regional community planning group (RCPG)
was required to develop a region-specific HIV prevention plan that described and
prioritized populations, their prevention needs, and prevention interventions to
address these needs. Each RCPG was required to produce an epidemiologic
profile and to conduct needs assessment activities. Until 1997, RCPGs had
determinative authority for a portion of the HIV prevention resources awarded to
the state health department. That is, each RCPG decided how resources were
to be allocated and made the decision as to which organizations/agencies would
receive these resources. This was not required by the CDC, but was a decision
made at the discretion of the state health department. In 1997, the state health
department terminated the authority of RCPGs to make funding decisions and
award resources to specific organizations. This decision was made after a
review conducted by the state health department of the methods used by
RCPGs to make such decisions, revealed a significant lack of capacity for
appropriate fiscal oversight and program monitoring, as well as a substantial
degree of conflict of interest on the part of CPG members relative to making

awards and monitoring contracts.

Simultaneously, the state health department convened a statewide CPG,
the purpose of which was to serve as an “umbrella“ for the regional planning

process. The SCPG had responsibility for developing a statewide prevention

112

plan. This plan was, simply, a compilation of regionally-identified priorities as
described in regional prevention plans. The SCPG was not responsible for
conducting needs assessment activities or for setting priorities for populations or

for interventions.

The SCPG had determinative authority for a portion of the resources
awarded to the state health department by the CDC. These resources were
used primarily to address gaps in data for particular populations or issues.
RCPGs were expected to discuss data gaps in regional prevention plans. When
such a gap was identified for two or more planning regions, the SCPG could
decide to allocate resources to support activities designed to fill these data gaps.
One example of this concerns migrant farm workers. This population was
identified in three regional prevention plans as being in need of HIV prevention
services, but the need for services was not justified due to a lack of specific data
regarding prevention needs (e.g., behaviors, perceptions of risk, preferences for
programming). Tire SCPG decided to allocate resources for needs assessment
activities to be centrally coordinated by the state health department. Similarly,
several RCPGs identified a lack of information about drug using populations as a
barrier to priority setting. The SCPG endorsed the state health department
conducting an HIV seroprevalence survey of drug treatment facilities throughout

the state, and allocated resources to support this.

According to the SCPG Operating Policies and Procedures (OPP), SCPG
membership was limited to 45 voting members. Each RCPG elected two

individuals to serve as the region’s representative on the SCPG. The OPP also

113

designated membership “slots“ for seven non-governmental organizations (e.g.,
Hemophilia Foundation of Michigan, American Red Cross) and five
governmental agencies (e.g., Departments of Education, Corrections and Social
Services). Six advocacy organizations (e.g., AIDS Alliance of Michigan) also had

designated membership “slots.“

Membership in the SCPG also included “agencies which provide HIV
prevention or related services to a particular constituency/community, which may
or may not be evenly distributed throughout each of Michigan’s HIV prevention
planning regions.“ A social service agency for Michigan’s Arab communities
became a member of the SCPG in this category. The OPP also described a
category for “Members-At-Large.“ This category of membership included
“individuals who represented infected/affected communities,“ but who were not
affiliated with a specific agency or organization. Several persons living with
HIV/AIDS (PLWH/A) joined the SCPG as Members-At-Large. The “At-Large”
category also included “individuals who have a particular knowledge, experience,
or expertise needed to facilitate, and/or enhance the planning process“. A

professor of psychology joined the SCPG as a Member-At-Large.

Regional planning groups generally had fewer members than the SCPG,
ranging from eight to fifty. The RCPG with the greatest number of members was
a six county RCPG, located in Southeastern Michigan, inclusive of the City of
Detroit. The RCPG with the fewest number of members was located in the
Southwest corner of the state. The RCPG based in the Southeastern portion of

the state had the greatest number of members for several reasons. This is the

114

most populous area of the state, and accounts for the greatest number of case
of HIV/AIDS. Geographically, there are a greater number of HIV/AIDS service
providers there than in other areas of the state. These factors indicate a
relatively larger pool of interested individuals and prospective members. This
RCPG also sub-regionalized and convened six (one for each county in the region
and the City of Detroit) sub-RCPGs. Finally, the health department managing
the process in this region hired three full-time staff to coordinate planning
activities, including recruitment of new members. The RCPG with the fewest
number of members was located in the Southwest comer of the state. The
relatively low number of members was due to the fact that the region
encompassed a large geographic area, coupled with the fact that the health
department utilized existing staff to coordinate the process, and there were few

HIV/AIDS service providers located in the region.

Written Operating Policies and Procedures (OPP), which functioned as
by-laws, were adopted by the SCPG. The OPP described the mission of the
SCPG, categories of membership, terms of membership, officers, committee
structure, procedures for conducting meetings, record-keeping requirements,
and voting processes. Meetings were conducted using parliamentary procedure,
and a simple majority vote, taken by a show of raised hands, was used for

decision-making.

Each RCPG convened in Michigan was required to write by—Iaws to
gevem CPG operation, elect officers, establish a committee structure to conduct

various aspects of the planning effort, such as conducting needs assessments,

115

setting program priorities, or developing epidemiologic profiles. Each RCPG had
to establish a Membership Committee to provide oversight and coordination of
recruitment, nomination, and selection of members. RCPG by-laws were
expected to describe how the business of the CPG would be conducted,

including procedures for decision-making.

In general, the RCPG by—laws looked fairly similar across regions as all
but one of the RCPGs had based their by-laws on a sample document provided
by the state health department. All officers were elected, on an annual basis,
through a formal nomination and election process. The committee structure of
RCPGs varied. As required, all convened membership committees, with more
variability in the committee structure relative to planning tasks - this was primarily
related to the number of members in a planning group. The larger planning
groups associated with the more pepulous areas of the state had relatively more
committees and a more complex committee structure when compared with
smaller CPGs in the less populous areas of the state. The three largest CPGs
convened committees for specific planning tasks (e.g., needs assessment, gap
analysis, community resource inventory, comprehensive plan, monitoring, and
evaluation). The remainder of the RCPGs tended to have one committee
charged with conducting the planning tasks, including writing the regional
prevention plan, and a second committee charged with monitoring local

providers.

The level of formality that RCPGs used in conducting meetings and

making decisions varied across regions. Some RCPGs conducted meetings in a

116

very infennal manner, while others were more formal in their conduct, adhering
rigidly to procedures outlined in their by-laws. According to the co-chair of an
RCPG that arrived at decisions through consensus, “we just hash out the issues
and by the time we’ve done that, we all agree. We don’t need to vote, but
sometimes we do that just to formalize things.” She also indicated that most of
the RCPG members knew each other and had worked together prior to
community planning. This was suggestive of a relatively high degree of trust
among members, as well as a shared sense of purpose which preceded

community planning.

Regions which tended toward more informal decision-making were
characterized by having few community-based organizations involved in
provision of HIV/AIDS services within the region. As a consequence,
membership in these RCPGs tended to include a greater number of health and
human service professionals than representatives from 0303, N603, or
individuals unaffiliated with a particular agency or organization. Health
professionals are generally knowledgeable about, and have at least some
experience with health service planning. This very likely contributed to the
apparent “like-mindedness" among members and mitigated the need for more

formal decision-making procedures.

Other RCPGs were highly formal in their activities, adhering very rigidly to
procedures and making decisions only through use of ballots. Regions which
rigidly adhered to procedures and employed formal decision-making procedures
had a larger number and diversity of CBOs and NGOs involved in HIV/AIDS

117

services within the region. These RCPGs tended to have a greater number of
members than RCPGs that employed less formal processes. Community
advocacy efforts were more prominent in these regions. Membership in these
RCPGs tended to include a greater number of representatives from CBOs and
NGOs, as well as community advocates when compared with the number of
health and human service professionals. Processes for planning for health
services were unfamiliar to 080 representatives and community advocates, in
particular. These factors influenced the dynamics among RCPG members in
such a way that necessitated use of formal operating procedures and decision-
making strategies. The RCPG representing southeastern Michigan in particular,
experienced a high degree of conflict among members, and meetings were often
characterized by shouting, exchanges of personal insults and, not infrequently,
accusations of racism. As one member of that RCPG, a public health nurse,
remarked to me, “one of the best things about community planning is that it
brings together so many organizations and communities that have never worked

together before. That’s also one of the worst things about community planning.“

In addition to membership committees, most RCPGs elected to establish
additional committees to conduct required planning tasks. Committees were
made up of sub-sets of RCPG members, most of whom possessed a particular
interest in the assigned task and/or the expertise needed to conduct it. The work
of these committees was fed back to the full RCPGs for further deliberation and
action, when appropriate. Several RCPGs, particularly those with a sub-regional

structure, also convened an Executive Committee charged with overall

118

coordination of planning tasks and setting the direction for planning activities for
the RCPG. Executive Committee membership was made up of representatives

of each of the sub-regions in addition to the chairs of the full RCPG.

Ad hoc workgroups were convened by the SCPG to address issues
related to specific populations or other topics of interest. During the period of
field research, ad hoc workgroups addressing African American and Latino
communities were convened. A workgroup addressing “bisexual men“ was also
convened. Membership in these workgroups was open to individuals who were
not members of the SCPG and included representatives from RCPGs, as well as
individuals affiliated with community-based organizations who were not directly
involved in the community planning process. The intent of these workgroups
was twofold: (1) to provide a means for obtaining input from representatives of
these populations aside from formal membership in either the state or regional
CPGs; and (2) to identify and discuss socio-culturally-specific issues and
concerns relevant to HIV prevention program and policy for these populations.
These workgroups were convened based upon the request of one or more
SCPG members who identified an interest in, and need for the workgroups. The
outcome of the deliberations of these workgroups were reported back to the full
SCPG. Committee and workgroup meetings were convened between full SCPG

meetings, frequently via teleconference.

While SCPG was limited to 45 members, the actual number of persons
attending SCPG meetings often approached 100. This was due to RCPGs

sending additional representatives to attend the meeting, including staff or

119

consultants. Between three and five state health department staff also attended
SCPG meetings. This limited the venues where SCPG meetings could be held.
Typically, facilities in a local hotel or convention center were rented for these
meetings. Ballrooms were partitioned off using folding acoustical walls. A
meeting table for approximately 50 people was set up as a hollow rectangle and
covered with white table cloths. The SCPG health department co-chair (who was
also the director of the Special Office on AIDS Prevention was insistent that all
voting members “have a seat at the table, literally and figuratively,“ and that they
all be able to face each other. Each place was set with a place card, indicating
the SCPG member’s name and affiliation, a small pad of paper, a pen and a
glass for water. The SCPG co-chairs were placed at the head of the square,

facing the exit door. Microphones were set every thme to four seats.

Additional chairs were setup along the walls of the room to accommodate
staff and guests. A “sign-in“ table was set up outside the front door. A SOAP
staff member greeted each meeting participant and provided him or her with a
voting card and “meeting packet". The packet included the meeting agenda,
minutes from the previous meeting, and informational materials related to
presentations being made on that day. Each participant was asked to record his
or her meeting attendance via their signature on a “sign-in“ sheet. New
members and guests were asked to sign confidentiality statements, which
indicated their agreement not to disclose personal infennation, including HIV
infection status, to others outside of the meeting. A variety of materials such as

flyers for upcoming trainings, research reports, arlicles from professional journals

120

or news outlets, past meeting minutes, and promotional materials for community
events were also displayed on this table and available for participants to take
away with them. A refreshment table was set along the exit wall door. Juice,
soda, coffee, tea and bottled water were provided throughout the day.

SCPG meetings followed an established agenda format, which. from
meeting to meeting, varied little. The following is typical of SCPG meeting
agendas:

Introductions

Call to Order

Verification of Quorum
Acceptance of Agenda

Moment of Silence (to honor those who died from HIV/AIDS)
Acceptance of Minutes
Announcements

Committee Reports
Presentations and/or Action Items
Public Comment

Adjourn

Each agenda included at least one “educational item“ such as a presentation on
HIV/AIDS epidemiology, an innovative program strategy such as social
marketing, or findings fiom research activities. Two to three times each year,
agendas included “action items“ such as endorsement of the health department’s
annual funding application to the CDC, or a formula for allocating prevention
funds within the state. Meetings lasted a minimum of six hours but sometimes
ran a full eight hours, depending upon the agenda. Minutes from all meetings
were taken by state health department staff, distributed to members prior to the
next SCPG meeting, and were also archived.

Lunch and refreshments were provided at SCPG meetings. Generally, a

121

light continental breakfast of rolls, bagels and fruit was provided in the morning
followed by a “sit down“ lunch at noon. A light snack such as cookies, chips or
pepcorn was provided in early aftemoen. Members were quite emphatic that
meals and refreshments be provided by the health department, arguing that they
were uncompensated for their time and expertise, and that it was “the least the
health department can do.“ Others asserted that sharing meals would be an
important means for building a sense of community among SCPG members
who often had no other opportunities or occasions to interact with each other.
Frequently, members argued that particular types of food should or should not
be served, depending upon the cultural meanings associated with those dishes.
In one instance, several Latino members of the SCPG argued that only “gringo“
food was served, and that if their participation in this process was valued,
appropriate “accommodation“ would be made. The compromise consisted of
ensuring culturally appropriate dishes were served at all of the meetings of the
Latino workgroup, and that the meal served at the May meeting of the SCPG

would reflect Mexican traditional dishes.

During the course of the field work, an Executive Order was issued by the
Gevemor forbidding the serving of meals, or even coffee at meetings and other
events sponsored by any state gevemment office. Because of this, no coffee or
meals were served to the SCPG at the meeting that follomd issuance of this
order. Even though SOAP had communicated the Order to members prior to the
meeting, health department staff were faced with many angry members who
commained that they had traveled for several hours to get to the meeting and felt

122

that it was discourteous for the health department to fail to offer “at least coffee.“
Other members indicated that they did not have the money to purchase lunch
because they expected that they health department would provide them with this,
since they were not being compensated for their time. Clarifying that members
would be reimbursed for travel expenses associated with attending the meeting
(including lunch) did little to diffuse the anger of some members who indicated
that they felt they should not have to front the money for lunch. The health
department co—chair ended up purchasing lunch,with his own money, for a

number of members that day.

Subsequent to that meeting, the director of the state health department
received several letters of complaint about the Executive Order. Some of these
letters accused the health department of being insensitive to the health needs of
persons living with HIV/AIDS. A few highlighted the role that food plays in
various cultures relative to community building or community cohesion, and its
importance to the community planning process. The director simply passed
these letters along to the HAPIS director with the message to “rein in the group.“
The Executive Order was in place for the next seven years. To resolve the
issue, HAPIS contracted with a CBO to provide logistical support for SCPG
meetings, including arrangements for meals and travel, thus avoiding the need to

submit bills for these items to the state health department.

RCPG meetings tended to follow a format similar to that of the SCPG,
with committee reports, informational presentations, and/or action items taking
up the bulk of meeting time. RCPG meetings, did tend to be shorter than SCPG

123

meetings, and generally ran between two and four hours. Some RCPGs met as
frequently as bi-weekly and others met quarterly. Some met only during regular
working hours, while others met only in the evenings. RCPGs utilized a variety
of venues for meetings, including health department meeting rooms, hotels, and
conference rooms in local schools. One RCGP utilized the basement of a local
church, whose pastor was an RCPG member, while another was able to “make a
deal“ with a local delicatessen to use their company meeting rooms (and obtain
food at a discount). The RCPG representing the upper portion of the lower
peninsula used video—conferencing during the winter months when travel was

particularly hazardous, particularly over a large geographical area.

Summary

In this chapter, I have described the setting in which my research was
conducted. The description addresses conceptual as well as physical research
“sites“. Michigan served as a local case study for a national policy initiative and
so was highlighted in this discussion. The next chapter begins the presentation

of the findings of my research.

124

CHAPTER 6
HIV RISK AND COMMUNITY

Introduction

In this chapter I discuss how community is constructed and articulated in
the context of the policy on community planning. I begin this discussion with an
examination of HIV risk, including the criteria which are used to construct HIV
risk, and the social dimensions and implications associated with HIV risk. I also
address the relationship between HN risk and community, in terms of how it is
discussed in the Guidance and how this is articulated by CDC through its

implementation of policy.

HIV Risk

In the field of epidemiology, health conditions are described in terms of
demographic characteristics such as gender, race, ethnicity, and age. HN and
AIDS are, like other health conditions, described in this manner. Each case of
HIV or AIDS is also, first and foremost, classified according to “risk,“ i.e., the
most likely mode of transmission or acquisition of the virus. HIV is transmitted
through contact with an infected individual’s blood and other body fluids, such as
semen and vaginal secretions. The predominant modes of transmission are
through sexual contact with an infected person, or by sharing contaminabd
needles and “works“ (i.e., cottons, cookers) used for injecting - primarily illicit -
drugs. HIV can be transmitted from an HIV-infected woman to her child during
pregnancy or childbirth, although chemoprophylaxis is available to prevent

transmission. HN is also present in breast milk and so can be transmitted from

125

mother to child through breast feeding. Transmission of HIV through receipt of
infected blood or blood products occurs only very rarely in the United States,
since procedures for screening these products were widely implemented.

The CDC uses standard categories of HIV risk based upon behaviors
associated with HIV transmission and acquisition. The standard epidemiologic
designations of HIV risk include:

Men who have sex with men (MSM)

Men who have sex with menfrnjecting drug users (MSMIIDU)
Injecting drug user (IDU)

Heterosexual

Perinatal

Blood products

The category “heterosexual“ focuses on the behavior of an individual’s sex
partner(s). HIV/AIDS cases attributed to heterosexual contact includes
individuals who have had sexual relations with opposite-gender sex partners who
are HIV-infected (SP-HIV), injecting drug users (SP-IDU), behaviorally bisexual
men (SP-MSMNV),7 or recipients of blood or blood products (SP-blood).

An individual with multiple behavioral HIV risks is categorized according to
the behavior which is believed most likely to result in transmission or acquisition
of the virus (i.e., the most efficient mode of transmission). For example, if a man
has sex with both men and women, he would receive epidemiologic classification
as an MSM. For MSM who are also injecting drug users, there is a unique

category reflecting dual risk (i.e., MSM/IDU), which reflects the belief that MSM

 

7Wlthinthehet3losexualriskcalegory,tiredesignationofasexpartnerteamanwhohassex
wiflr menandwomen (SP-MSMNV) applies onlytowomen.

126

and IDU are equally efficient modes of transmission. Currently, there is not a
risk category which specifically reflects men who have sex with both men and
women, because it is believed that female to male transmission is less efficient
than male to female or male to male. Thus among MSM/W, assignment of risk

represents the more probable means of transmission.

This categorization scheme is standard across the United States and all
HNIAIDS-related data are reported to the CDC according to it. HNIAIDS
statistics are reported by risk. While HNIAIDS statistics are also reported in
terms of demographic characteristics, such as gender, race and age, risk is the
primary factor used by the CDC to classify individuals and define communities, in
the context of community planning. Other characteristics are of secondary

importance.

How and why did risk become conceptualized in this manner? The first
cases of the disease appeared among self-identified gay men, and a causative
biologic agent was not apparent. For this reason, public health professionals’
first questions about the etiology of the disease focused on whether there was
something unique or peculiar about the biology of gay men or their “lifestyle.“
While the disease soon began to affect other groups, most notably Haitians,
heroin users and hemophiliacs, a causative biologic agent was still unknown.

Thus, emphasis remained on apparent social groupings.

Once a causative agent was identified, CDC adopted the behaviorally-
based categories of risk that are in use today. While CDC may have intended

127

these categories to be more neutral or “value free,“ HIV risk categories still
reflect the sense that there are distinct and discrete social groupings of people
“that are at special risk and in need of special prevention efforts“ (Singer
1994:937). Epidemiologists, like other scientists, are “cultural actors, prone to
the blind spots and folk theories of their own society“ (Herdt 1992:7). Continuing
to use HIV risk to denote purported social groupings of people who might be
more likely to be affected by the disease, enables us to maintain the safe
distance from a source of contagion, thereby allowing us to maintain a belief that
we cannot be affected by it In the U.S., HN has not rapidly generalized to the
“mainstream“ or so-called “general population“ (i.e., the white, middle-class).
This fact allows us, as a society, to maintain the belief that discrete and bounded
risk groups are affected by HIV, despite the fact that the predominate mode of

transmission globally is heterosexual sex.

Critical commentary in anthropology has highlighted some of the effects
that result from this notion of HN risk. These effects include promoting stigma
and discrimination among already stigmatized groups; perpetuating
misperceptions of personal risk for HIV; contributing to a misunderstanding of
who is at risk; mis-targeting prevention efforts; and selecting the wrong
prevenflon strategies (Glick Schiller 1992; Watney 1994; Fee and Fox 1988).

There is also a growing body of work in critical medical anthropology
which argues that social and structural factors are more important to
understanding HIV risk than are individual cognitive factors. Social and
structural factors act as both direct and indirect barriers and facilitators to HIV

128

risk and prevention behaviors by influencing the range of options available to a
social actor. Social and structural factors operate at the level of the individual
interpersonal relationships (i.e., when social nerrns influence behaviors) and at
an institutional level (e.g., when access to prevention services influences
adoption of risk reducing behaviors, such as when needle-exchange programs
are prohibited). Macro-level structural factors and forces, specifically political,
social and, especially, economic inequalities, may well be the most important to
examine in order to better understand risk. These factors have tremendous and
far-reaching affect on individual risk, specifically because they influence power in
interpersonal relationships (See Farmer 1999, Singer 1994, Singer 1995,
Rhodes et al., 2005). HIV risk, as it is constructed epidemiologically, masks

these important structural factors.“

The CDC is certainly aware that stigma exists and that its existence
hampers prevention efforts. Its scientists are aware of and acknowledge that
social and structural factors, particularly poverty, are associated with HIV/AIDS.
What epidemiologists and the leadership of CDC seem unwilling or unable to do,
is to understand that individual behavior is, in fact, Influenced and mediated by
such factors. With respect to prevention, the CDC in both domestic and
lntemational efforts, approaches prevention efforts almost entirely from the

perspective of the individual, and its prevention programs assume each

 

° While beyond the scope of this dissertation, It is important to highlight the relationship beMen
socioeconomic status and HIV. Socioeconomic information (especially poverty status) is not
collected in association with HNIAIDS surveillance. Nevertheless, in Michigan, the highest
rates of HIV infection are found in poor Inner city neighborhoods, where racial/ethnic minorities
constitute a substantial portion of the population. This is the same pattern across the country. It
shouldalsobenosurprisethatthehighestratesoleVlAlDSgloballyoccurinthapoorest
nations.

129

individual will make rational decisions about his or her behavior if provided with

the information and tools necessary to change detrimental behaviors.

Risk and Community

The concept of community is central to this policy initiative. The Guidance
does not, however, provide a precise definition for it. The closest approximation
to a definition of community can be found in the description of CPG membership
requirements. The Guidance mandates that the membership on each CPG
convened within a state be representative of the epidemic within that jurisdiction,
as described by HIV/AIDS surveillance data:

Representation on a community planning group includes persons

who reflect the current and projected epidemic in that jurisdiction

(as documented by the epidemiologic profile) in terms of age,

gender, race/ethnicity, socioeconomic status, geographic and

statistical area (MSA)—size distribution (urban and rural residence)

and risk for HIV infection. Members should articulate for, and have

expertise in understanding and addressing, the specific HIV

prevention needs of the populations they represent. At the same

time, they must be able to participate as group members in

objectively weighing the overall priority prevention needs of the

jurisdiction (CDC 1996: 4-5).

In constructing epidemiologic profiles and describing populations to be
targeted for HIV prevention efforts, the Guidance requires CPGs to consider
“surrogate markers for HIV risk behavior“ (CDC 1996:11), such as incidence and
prevalence of sexually transmitted diseases, non-injecting drug and alcohol use,
and teen pregnancy rates. Infection with viral and bacterial sexually transmitted
diseases (STDs) has been found to increase the probability of HN infection (IOM

1997). In this way, presence of STDs are considered to be surrogate markers of

HIV risk. Individuals diagnosed with STDs , then, are at risk for HIV, a

130

population group to be targeted for HIV prevention efforts, and a community in

the context of CPG membership.

CDC, through the Guidance, articulates a number of characteristics and
factors which are relevant to representing who is “affected“ by HIV. In terms of
implementation and interpretation of the policy “on the ground,“ however, only
two characteristics appear to be salient with respect to defining community, at
least from the perspective of CDC. The first is HIV risk, and the other is
race/ethnicity. In this way, epidemiologic categories are synonymous with
community. This link is illustrated through the implementation of community

planning.

Each year, state health departments were required to provide the CDC
with a report on CPG membership. These reports, along with health department
applications for funding, were reviewed by teams of individuals who represented
CPGs, NGOs, CBOs, and health departments from other states (see Chapter 3
for description of the “External Review of Continuation Applications"). It is
through review of this report that the CDC assessed the extent to which CPGs
within each state were representative of the current and projected epidemic
within that jurisdiction, and the extent to which CPGs included membership

representative of the myriad of other characteristics outlined in the Guidance.

The standard report format required that health departments tally the
number of members according to age, race, ethnicity, gender, sexual orientation,

HIV risk, HIV infection status, primary expertise, and primary agency affiliation. It

131

was CDC’s expectation that if, for example, 50 percent of AIDS cases within a
state were attributable to MSM, then 50 percent of CPG membership would be
MSM, and it was the health department’s responsibility to ensure that threshold
of representation would be met. Health departments that failed to achieve
representation in this manner could be subject to conditions or restrictions being
placed on federal HIV prevention funding. For example, Michigan’s 1998 SCPG
membership profile indicated that 17 percent of members were MSM, 11 percent
were IDU, and 0 percent were heterosexual. The CDC's review of Michigan’s
funding application that year (of which the membership profile was one
component), stated “ The applicant should continue to look for strategies to

reach MSMs of color.”9

In describing CPG membership, health departments reported on a
number of other characteristics and factors (e.g., gender, age, agency affiliation,
expertise). It is notable that little to no attention was paid to other characteristics
by either the CDC or by the “teams“ that reviewed health department funding
applications. Michigan has never been cited by the CDC or the teams that
reviewed funding applications, as failing to achieve representation in terms of
gender, age or any of the other characteristics specified by the CDC, even when

it was clear that the SCPG was not representative of the epidemic in terms of

 

9 The reviewers did not fault the MDCH for failing to a achieve an acceptable proportion of IDU
representatives. At the time, 51 percent of all AIDS cases were attributable to MSM and 26
percent to IDU. A portion of the health departments funding was restricted that year until
anangements for “technical assistance“ in recruitment of MSM was obtained.

132

these characteristics.10

Each year, the CDC required state health departments to report on
planned expenditures of federal HIV prevention resources. “Budget Tables”
prepared by health departments presented the amount of federal funding spent
across program categories including: counseling and testing, health education,
public information, capacity development, evaluation, and administration.
Funding for counseling and testing and health education (i.e., services provided
directly to clients) had to be cross-tabulated by race/ethnicity and HIV risk. The
expectation was that funding would “follow the epidemic,” meaning that, for
example, the proportion of resources spent for MSM would mirror the proportion
of total HIV/AIDS cases for which MSM accounted. National-level data compiled
by the CDC for fiscal years 1997 (the first year that these data were compiled)
through 1999 (the last year for which these data are available), revealed that the
amount of funding spent on MSM was below AIDS prevalence percentages for
all racial/ethnic categories. For injecting drug users, the amount of funding was
below AIDS prevalence percentages for racial/ethnic minorities. For
heterosexuals, the amount of funding was well above the AIDS prevalence
percentages for all racial/ethnic groups (Holtgrave 2001). In short, funding was

not being directed toward those populations that were most at risk for HIV.

The Guidance on community planning requires CPGs and health

departments to conceptualize 'community’ primarily in terms of HIV risk, but

 

‘° The 1998 SCPG membership profile revealed, for example, that 60 percent of members were
women compared with only 22 percent of all AIDS cases. Similarly, 77 percent of SCPG
membership was ages 40 years and older, compared to 31 percent of AIDS cases.

133

also by race/ethnicity. At least in terms of the policy on community planning,
groupings of individuals who share HIV risk are considered discrete
communities. Throughout the Guidance these discrete groupings are referred to
interchangeably as “affected”, “at-risk”, or “high risk” communities. Referring to
people grouped on the basis of such characteristics as members of a
“community” is suggestive of some type of commonality, ostensibly important to

HIV prevention efforts, among those who share these characteristics.

There is, then, a lack of clarity relative to the definition of community. The
Guidance does not provide a precise definition of community. Instead, it
provides a “mixed bag” list of socio-demographic characteristics, epidemiologic
constructs, and health conditions. The list is, in a vague way, linked to the notion
of community. The definition of community that CDC appeared to be using
becomes more precise in implementation or, more specifically, in evaluation of
the implementation of the policy. The membership profiles and "Budget Tables”
reveal that HIV risk and race/ethnicity are, for CDC, synonymous with

community.

Finally, the community planning Guidance explicitly describes the manner
in which community representatives are expected to participate in community
planning. Participation of “affected” communities in the community planning
process is intended to ensure that the values, beliefs, and norms of these
communities are accurately expressed, and that this information is used to
inform decisions about prevention programming and policy. Inclusion,

representation, and parity of these communities is cited as a tenet of community

134

planning.
...lnclusion is defined as the assurance that the views, perspectives
and needs of all affected communities are included and involved in
a meaningful manner in the community planning process. This is
the assurance that the community planning process is inclusive of
all the needed perspectives... Representation is the assurance that
those who are representing a specific community truly reflect that
community’s values, norms, and behaviors ..... However, these
representatives must also be able to participate as group members
inobjectively weighing the overall priority prevention needs of the
jurisdiction....Parity is the condition whereby all members of the HIV
prevention community planning group are provided with
opportunities for orientation and skills building to participate in the
planning process and have equal voice in voting and other
decision-making activities. . .(C DC 1996z4).
“Representation” in this context is an important concept to examine because it is
concerned with authenticity. Not only must representative individuals self-
identify as a member of a community, but they also must be recognized by other
community members as an authentic representative of that community,
possessing the knowledge and expertise necessary to accurately and fully
represent their community. Thus, a CPG member who represents MSM/IDUs,
for example, must “tmly reflect that community's values, norms and behaviors” in

order to be considered its authentic representative.

The definition of community, as it relates to the notion of authenticity, is
clouded when the ideas of the architects of the planning process are considered.
One of my key consultants who was in a critical leadership position within the
CDC, stated that CPGs should be made up of “stakeholders...govemmental and
non-governmental; scientific and community advocates; and those infected and
affected by HIV.” Another key consultant, the executive director for a national-

level advocacy organization stated, “community is cut on a lot of different levels. I

135

think that community also meant for some people...that you had to bring religious
communities, the business community, the education community, and the health
care community to the table... There are a lot of different organizations, with a
lot of different views and a lot of different constituencies..." The executive
director of a C80 serving HIV-infected gay men indicated that the primary
benefit of community planning would be “the power of coalitions among
fragmented constituencies.” Finally, the MDCH HIV/AIDS program director
indicated that with regard to the membership of the SCPG, it was important to
have “every stakeholder at the table,” and so in crafting the by-laws for the
SCPG, he decided that 18 out of a total of 45 membership positions would be
designated for specific organizations that provided HIV/AIDS services or
advocacy. In this way, organizational affiliation was emphasized over other
characteristics, including risk, race/ethnicity, gender, age, expertise, and

geographic representation.11

All four of the individuals quoted above were involved in developing the
community planning initiative, including reviewing and commenting upon drafts of
the Guidance. What struck me in their remarks was that organizations, as much
as individuals “in the life”, were apparently at the front of their minds with respect
to determining “who" should be involved in community planning. The
organizations they seemed to be thinking of had real and direct connections to

communities. Indeed, the Guidance further describes representation on a

 

'1 The 1998 membership profile for the SCPG indicates that all SCPG members were affiliated
with some agency or organization, 60 percent of which were NGOs providing HIV/AIDS services
and 11 percent of which were advocacy organizations. The remaining 40 percent of members
were affiliated with state and Iowl governmental organizations.

136

planning group as inclusive of ”representatives of key non-governmental and
governmental organizations providing HIV prevention and related services [as
well as] representatives of business, labor and faith communities“ (CDC 1996z5).
These organizations were operated by individuals with political experience and
expertise in a myriad of subjects including planning health services, health
education, advocacy, and community mobilization who may or may not have
been “of the community“ they represent and/or serve (e.g., an organization may
provide services to or advocacy on behalf of injecting dnJg users, but the staff
may not, themselves, be or have been, injecting drug users). What is important
to highlight here, is that organizations and/or service agencies were understood,
by those who developed the policy on community planning, to be authentic

representatives of affected communities.

Attention to these organizational representatives in the planning process,
is almost entirely absent in implementation and evaluation of community
planning. For example, the membership profiles require health departments to
provide the number of individuals who represent business, labor, and faith
communities. I am unaware, however, of any jurisdiction that has been
evaluated as having too few CPG members from any of these “communities.”
Certainly, Michigan was never cited for failing to achieve appropriate levels of
representation of labor communities, for example. Instead, emphasis was
placed on direct community participation of affected communities, defined
primarily on the basis of HIV risk. In implementation of the policy, authenticity in

representation was only possible if an individual was, for example, an IDU.

137

While the policy on community planning would appear to allow for a
relatively broad and flexible definition of community, examination of
implementation of the policy at the Federal level, specifically the evaluation of
membership through “team“ review of membership reports, indicates othenrvise.
In fact, community is understood and defined relatively narrowly. Community, at
least for CDC, concerns social groupings, determined on the basis of HIV risk
and, to a lesser degree race/ethnicity. HIV risk, as well as race, are cultural

constructions, derived from the biomedical paradigm.

In implementing the policy (and in evaluating state health department
compliance with the policy), the CDC focused substantially on HIV risk. The
notion of risk was implicated in their assessment of the success of the policy in
involving “affected communities“ in the planning process. HIV risk, as well as
race/ethnicity, was also implicated in evaluating the success of community

planning with respect to ensuring that funding “follows the epidemic.”

Discussion

Referring to a group of people as a community implies that they think alike
about the world and that they share common values, norms, beliefs and
attitudes. In terms of the community planning policy, community has been
conceived of as synonymous with HIV risk. HIV risk is defined primarily on the

basis of specific behaviors associated with HIV transmission.

Social groupings constructed on the basis of HIV risk have limited

correlation with “real“ social identities. Many men that CDC classifies as MSM

138

neither self-identify as “gay“ or homosexual, nor do they consider their sexual
partner preference as central to their social identity. Racial and ethnic minority
men, for example, are less likely than white men to self-identify as “gay,” or to
acknowledge same gender sexual partners. In the context of discussion on the
“down low"12 phenomenon among CPG members, an African American man
stated:

Because you can’t just come out and tell a brother, ‘oh, I’m

bisexual dawg.’ You got to be straight and don’t let them know.

You can’t tell a straight man he’s gay. You always got to talk to him

and say, ‘Man, I know you ain’t gay, its just something you like.

That’s what you want. That’s your fantasy.’ I’m not homosexual.

I’m not bisexual. I’m a try sexual. [I try] whatever I want.
There are many potential reasons that men do not self-identify as “gay” or
homosexual. It may be a result of cultural homophobia (Peterson 1995); cultural
meanings attached to same gender sexual contact (Herek and Green 1995,

Murray 1995) or simply that other factors or symbols, such as ethnicity, are more

salient for social identity.

HIV transmission can occur as the result of reusing syringes and other
injecting equipment contaminated with HIV-infected blood. HIV risk is
constructed on the basis of the injecting behavior, per se. Early epidemiological
research suggested a social significance associated with “sharing” of syringes
and works. That is to say, it was believed that lDUs intentionally shared their
syringes or other works as a means of solidifying social bonds. This contributed

to the perception of lDUs as having a “community” identity. Ethnographic

 

‘2 Men who are on the “down low' or the “DL’ have sex with both men and women, but deny their
sexual relationships with men.

139

research, however, has clearly demonstrated no particular social significance
associated with the sharing of syringes and works (Koester 1994, 1996). lDUs
prefer clean works and sharp needles, and will only “share“ works or use works
previously used by someone else when they do not have their own works or
access to new syringes and works. According to one man, an active IDU, “I use
my own paraphernalia and needles. And if I use a stem behind somebody else, I
always clean it. But I usually have my own. Maybe one time out of a hundred, I
might use someone else’s but I always make sure I clean it. “ Another man,
also an active IDU, indicated sharing his needles and paraphernalia only with his
wife, “...sometimes I run out [of needles] before she runs out. I don’t want to use
a dull needle. I’ll use one of hers, but I don’t consider that sharing, because I’m
not getting from my buddy down the street. I know she’s clean, so I don’t

consider that sharing.“

It is perhaps most difficult to make sense of the notion of a “heterosexual
community.” Heterosexual risk is constructed around the risk of sex partners. It
excludes sex partners of IDUs who themselves are IDU, MSM, or who have
received blood or blood products. Heterosexual risk implies a social grouping
predicated upon a shared experience of being a sex partner to someone at risk.
In describing in what contexts and with which partners she used condoms,
Talitha, an African- American regional CPG member who supported herself
through commercial sex work, stated “Oh, with him [her boyfriend]... I don’t have
no protection with him at all. When I solicit the streets, that’s when I bring up the

protection on everybody.“ This particular woman had been involved with this

140

boyfriend for less than one month. Her boyfriend used injecting drugs, and she
reported that she did not know whether he shared his needles, and that she had
never asked him if he knew his HIV status. Compare this to Leslie, a
professional photographer and an RCPG committee chairperson, who indicated
that she had become infected with HIV from her husband, “AIDS didn’t affect
white, middle-class, college educated people. Andy had hemophilia and they
didn’t tell us that he had gotten infected [clotting] factor for a long time.
Meanwhile, I got infected from giving my husband a blow job after I had oral
surgery!” Both of these women could clearly be classified by the CDC as at risk
heterosexuals - Talitha by virtue of her boyfriend’s injecting drug use and Leslie
because of her husband’s HIV-infection. These women, however, very likely
have little else in common. Individuals whose HIV risk is “heterosexual” may, in
fact, share this particular kind of experience (i.e., they have a sex partner who is
at risk), but do not necessarily share that experience with each other (Kane and
Mason 1992). In sum, the “problem“ with HIV risk is that socially relevant

categories have been constructed rather than empirically discovered.

By grounding community in epidemiologic constructs, the CDC Guidance
treats community identity as both singular and fixed. A man can have sex with
both men and women but will still be defined as an MSM. One cannot be both
MSM and heterosexual. Similarly, a man who had sex on occasion, in the
distant past, with another man, but who currently has only sexual partners who
are women, continues to be categorized as an MSM. In the context of the policy,

individuals belong to one community or another, predicated upon primary risk,

141

i.e., that behavior which has been calculated to be the most likely mode of
transmission. From the perspective of risk as the marker of community, once

community affiliation is ascribed, it does not change, even if behavior changes.

From a Foucauldian perspective, the notion of community constructed and
articulated through the policy on community planning, exemplifies people being
made into subjects through use of “dividing practices.“ Dividing practices, in this
case, are predicated upon discursive knowledge, which is implicated in the
exercise of power. The social groupings created by these dividing practices
(i.e., HIV risk) only matter when those in positions of power and authority say so.
Clearly, the CDC, as one of the world’s premier health agencies, has such

authority.

Community planning policy uses dividing practices to make people into
subjects, and uses the “value-free“ language of science to do so. Initially, AIDS
was referred to as Gay Related Immune Deficiency Syndrome (GRIDS),
because the first cases were identified among young men. The fact that these
men were homosexual tagged GRIDS as a sexually transmitted disease, and
suggested that something unique to the gay “lifestyle“ was implicated in
transmission. As cases among injecting drug users began to be reported, AIDS
became associated with illicit drug use. Portraying AIDS as a sexually
transmitted disease and associating it with other marginalized populations, such
as drug users, resulted in HIV/AIDS being highly stigmatized (Bayer 1989,
Gilman 1988, Sontag 1988). AIDS, then, occurred among “risk groups“ and not

in the “general population.” “Risk groups“ became the cultural “other” and

142

considered a source of contagion or pollution. Drawing boundaries around the
“other” using epidemiologic terminology, enabled containment of the contagion.
In effect, the concept of risk groups allows a division between “us“ and “them."
Adoption of the notion of HIV risk was intended to accurately represent
epidemiologic facts and to decrease stigma associated with the disease. Even
so, HIV risk continues to imply discrete social groupings. Outside of the context
of community planning, this bolsters the notion of “the other” as affected by
disease and reinforces stigma. HIV risk within the context of community
planning has a different relationship to stigma. This will be explored further in

Chapter Seven.

Summary

In this chapter, I examined the concept of community as it is defined by
policy. The chapter began with a description of construction of HIV risk, followed
by a discussion of the construction of HIV risk as a social and cultural
phenomenon. Next, I addressed the relationship between HIV risk and
community. Finally, I examined the consistency between the policy and its
implementation, with respect to how community is defined and articulated by
CDC. In the next chapter, I will turn my attention to the construction and

articulation of community at the local level.

143

CHAPTER 7
LOCALLY DEFINING COMMUNITY
Introduction
In the last chapter, I examined community as defined through federal
policy. In this chapter, I turn to an investigation of community as it is defined and
experienced by participants in the planning process. I will examine how those
involved in community planning understand the federal policy on community,
highlighting the extent to which there is congruence with their personal definitions
and constructions of community. I will then address community as it is
constructed “on the ground” by those involved in community planning. The
relationship between community identity, knowledge, and power will also be

explored.

Local Perspectives on Community Defined in Federal Policy

I asked key informants to comment on the concept of community both in
terms of how it is defined by the CDC, and how it appears to be understood by
those involved in community planning. In particular, I asked informants to
comment on the extent to which CDC-defined communities matched

communities, as defined by participants in the community planning process.

Bob Schrader was a white man who self-identified as gay. He served as
the executive director of a community-based AIDS service organization, and was
a member of both a regional community planning group and the SCPG. When
asked to comment on the definition of community, pursuant to the CDC

Guidance, he stated:

144

l think...it is a lot like when people say “gay community.“ There is
no such thing. It’s why I try to use the term “population“. It’s a little
more accurate. Community to me, at least, has always meant that
there is a group of people with some shared sense of identity and
some shared sense of norms and values, or at least some shared
sense of boundaries of what constitutes their community. That’s
not true of gay people, and I don’t think its true of people who have
AIDS. They have nothing else in common, other than the fact that
they have AIDS. Personally, I think that’s the biggest mistake that
we make is looking at people as if they’re a monolith.

Stuart Southern, another SCPG member who self-identified as gay,
appeared to view the CDC definition of community as fairly absurd. When I
asked him to comment on this, he snorted and remarked, with a high degree of
sarcasm:

STD diagnosis and treatment is a critical issue for HIV prevention,

but getting “community“ input is next to impossible — I mean

nobody is standing up and saying “I represent the chlamydia

community..."

Chris Dover, a member of the SCPG who described himself as gay and a
recovering alcoholic, shared similar views of the CDC definition of community:

Substance abuse is a big issue in the GLBT [gay/lesbian/bisexuall

transgendered] community, but we don't talk about ourselves as

MSM-IDUs.... I think most of the guys that fall into this category are

tricking to support their habit.

According to Lany Plimpton, who co—chaired the SCPG, was a member of a
regional CPG, and self-identified as a recovering injection drug user:

Yeah, junkies [IDUs] might hang out together, but its more about

scoring and using. Its not like we have a club or something. The

last thing we want to do is call attention to ourselves.

It should be noted that Lany prefaced his response to my question by rolling his
eyes and shaking his head, thereby highlighting his apparent disagreement with

the CDC definition of community.

145

Each of the individuals quoted above had clearly given the CDC-definition
of community a fair amount of thought, because all were very articulate on this
issue. In addition, each of these individuals in their responses to me on this
issue, indicated through laughter, sarcastic tone, and eye-rolling, that they found
the CDC definition to be, at best, inconsistent with how real people define and

understand community in their day-to—day lives.

All had come to a similar conclusion - that a common HIV risk is not a
sufficient marker of community. Even in the circumstance of apparent social
interaction, such as in the case of injecting drug users as described by Lany
Plimpton, groupings of individuals with similar behaviors should not be mistaken
for a community. In short, these informants were asserting their belief that the

CDC definition of community is both incorrect and inappropriate.

Categorizing individuals by HIV risk or by demographic characteristics
implies sameness among individuals included in particular categories. It
suggests that the community ostensibly represented by that category is

“monolithic,“ to use the words of one key informant.

The SCPG Membership Committee had responsibility for recruitment and
selection of members. In accordance with the Guidance, this committee was
charged with ensuring that SCPG membership was representative of the
epidemic in Michigan. Prospective members were asked to complete
applications, for review by the Membership Committee. In addition to describing

their interest in the SCPG, their experience with HIV prevention and their

146

particular expertise relative to HIV prevention, applicants were asked to indicate
their gender, age, race, ethnicity, HIV risk, and HIV serostatus. The Membership
Committee weighed this information in order to select applicants for membership

who would help them achieve representation, pursuant to the federal mandate.

On one occasion, the Membership Committee received several
applications from individuals who had each indicated that their HIV risk was
MSM. Committee members decided that they could only accept one of these
applications because accepting more meant that, in the words of the Committee
Chair, “We wouldn’t meet PIR [parity, inclusion and representation], we’d have
too many gay men and not enough IDUs.’ Thus, the Membership Committee felt
that it was forced to select the single applicant among all those who reported
their HIV risk as MSM who would “best represent the community.“ Another
committee member, a man who self-identified as gay, disagreed strongly that it
was possible to select one person to represent all MSM and retorted with the
following:

Even those folks that are here can’t represent all MSM. I mean

what about all those married corporate execs that I see cruising

Palmer Park in their Audis with baby seats in the back?

This man was referring to a well known park in Detroit where “closeted” men (i.e.,
those who do not self-identify as gay or admit to homosexual behavior) “cruise“

for sex (i.e., they seek opportunities for anonymous, and sometimes paid, sex

with other men).

I followed up on the notion that the CDC categories of risk imply

monolithic communities in key informant interviews in order to obtain a deeper

147

understanding of community planning participant’s disagreement with

classification in this manner.

I interviewed, together, two outreach workers affiliated with a syringe
exchange program who were also members of a regional CPG. Both self-
identified as recovering addicts. I asked them to comment on being described,
in the context of the planning process, as representatives of the IDU community.
One of the informants identified himself as black, rather than African American,
and made the following statement in which he describes himself in contrast to his
colleague:

[She] shot coke and I shot heroin. There’s a whole different

personality thing going on there. And a whole different culture.

She’s white, college educated and upper middle class and I’m the

opposite of that in every way. We don’t have anything in common

except that we both shot up.
His colleague, the other outreach worker, who had previously worked as an
international music promoter, stated:

I mean there I was living in Paris and hanging out with rock stars!

Using coke was almost a requirement of my job. It was long hours,

lots of travel and I had to deal with all sorts of people. High

maintenance people... Everyone used something. Heroin and

other stuff... was around, and I tried it - tried it all, but coke was my

drug of choice.

Referring back to her colleague (the first outreach worker) she remarked:

Yeah, [he] and I sort of ended up in the same place, but how we
got here couldn’t have been more different.

In my conversations with Bob Schrader, he expressed concern regarding
the potential, negative, impact on HIV prevention programs resulting from

reliance on a few, select, individuals.

148

The example of the African American community is real good. If

you look at the people that we’ve pulled from the African American

community, in many cases are not representative of the African

Americans [most impacted by AIDS]. There are class divisions

within the African American community, that are just as

pronounced as in the white community. And we always tend to

[gravitate] towards bringing people in from the black middle class...

I also think that when you lump people together as a community,

you miss out on the uniqueness of different parts of that community

that make programs work. If I try to prepare a program that’s

targeted to the “African American community,“ it would never work

because there is no single African American community. The

same is true for gay people. The same is true for people with

AIDS.
These statements illustrate a sense that was shared by many individuals
participating in the planning process. HIV risk is not meaningful to people as a
marker of community. In addition, HIV risk oversimplifies community, masking
the characteristics or factors which are more meaningful to people relative to

constructing and articulating community identity.

Local Construction of Community

If the CDC communities defined on the basis of HIV risk did not resonate
with participants in the planning process, how did participants think about
community? A number of symbols emerged as markers of community within the
context of community planning. HIV serostatus was important with respect to
constructing community identity. Race, particularly black versus non-black, was
used to distinguish community. “Sexual identity“ appeared to serve as a

symbolic basis for community identity, at least in the context of men who self-

149

identified as “gay.“‘3 Personal experience also emerged as an important
symbolic marker of community. Each of these markers of community will be

discussed, in turn, below.

Community Rooted in HIV Infection Status. HIV infection status serves as an
important symbolic marker of community. As noted by one of my key informants,
however, “[people with AIDS] have nothing else in common, other than the fact
that they have AIDS.“ So, being infected with HIV or having an AIDS diagnosis
is not sufficient to connote community. Instead, one must be “out“ about one’s
infection status, acknowledging it publicly and embracing this characteristic as
central to one’s social identity. An individual who is infected with HIV/AIDS

becomes a “person living with HNIAIDS“ (PLWH/A).

This manner of referring to those with HIV, is in stark contrast to “AIDS
victim,“ “AIDS sufferer,” or “afflicted with AIDS,“ labels that have often been
applied, by medicine, media and others, to individuals infected with HIV, and/or
with HIV disease. With this designation, it is important to emphasize the words
“person” and “living“. By deliberately choosing such words to describe
themselves, PLWHIA’s actively use what had previously been a stigmatizing
characteristic as a tool to place a positive re—frame on their identity. They are
“persons” rather than “sufferers” or “victims,“ and they are “living with,“ rather

than dying from HIV/AIDS. Indeed, PLWHIAs speak of becoming empowered

 

‘3 Individuals who self-identify as “gay”, assert a social identity which is in part predicated upon
their sexuality. specifically, their choice of same gender sexual partners. In contrast, the CDC-
defined risk category of men who have sex with men, is inclusive of all men who engage in sex
with other men, either exclusively, or in addition to women and regardless of whether they express
a social identity which is predicated upon their sexuality or choice of sexual partners.

150

both by their HIV status, and as a result of asserting their power to name

themselves.

Interviews with three PLWHIAs and observation of community planning
activities, particularly those related to identifying priority populations to target for
HIV prevention, made it clear that knowledge is implicated in the construction
and assertion of identity as a PLWHIA. Specifically, knowledge and expertise is
possessed uniquely only by those who are HIV-infected. The SCPG annually
reviewed its membership to determine whether it was in compliance with CDC
requirements. Stan, an SCPG member who was also a member of the Michigan
PLWHIA Task Force,“ suggested that there were too few PLWHIAs who held
membership on the SCPG and that consideration be given to establishing a
designated minimum number of membership “slots“ specifically for PLWHIAs.
Several other PLWHIAs in attendance, who were also Task Force members but
not members of the SCPG, supported this suggestion. Another SCPG member,
a public health nurse representing a county health agency, questioned why
PLWHIAs should participate at all, on a planning body that addressed HIV
prevention. In response, Aaron, a PLWHIA stated, “Nobody knows better about
prevention than someone who has the virus. We know why prevention didn’t

work for us.“ Aaron’s statement illustrates that knowledge, specifically

 

1"While a lengthy discussion of the Task Force is beyond the scope of this dissertation, it is
important to highlight that in addition to the SCPG, the MDCH convened a PLWHIA Task Force.
The Task Force, constituted entirely of PLWHIAs was convened for the purpose of providing the
MDCH with advice on HIV/AIDS policy and programming. Task Force members also engaged in
advocacy with elected officials, policy makers and community leaders. Participation in the Task
Force probably contributed to forging a sense of community identity among PLWHIA who were
members. All five SCPG members who reported being PLWHIA during 1998 were also members
of the Task Force.

151

knowledge rooted in the experience of living with HIV/AIDS infection, serves as
the basis for the PLWHIA identity. By deploying this unique knowledge, Aaron
was asserting that PLWHIAs have a priority position within community planning

and simultaneously reinforced his identity as a PLWHIA.

In 1998, the MDCH had the opportunity to submit to the CDC, a request
for supplemental HIV prevention funding. The application prepared in response
to the request for proposals included a request for funding to support
development of a prevention intervention specifically targeted to HIV-infected
individuals. Several SCPG members refused to support MDCH’s application,
arguing that these resources should be reserved for individuals who were
uninfected. Several PLWHIA members of the SCPG argued strongly to support
the funding request. Stan, who had been diagnosed more than ten years prior,
argued passionately to support the funding request, maintaining:

You get this virus from somebody else With the virus. Y'cu ddrl‘t get

it from somebody who is negative. If prevention was working for

PWAs, this epidemic would be over. We have to provide primary

prevention services to people who are already infected. It is

irresponsible not to.
This statement illustrates that PLWHIAs assert a priority “stake“ in prevention,
thus reinforcing their status within community planning. Ultimately, the SCPG
supported the funding application, inclusive of the request to support

development of an HIV prevention intervention for HIV-infected persons.

Community and Race/Ethnicity. Race/ethnicity is an important marker of
community in the context of the community planning initiative. In 1997,

members of the SCPG formed two ad hoc workgroups to identify priority needs

152

of African American and Latino/Hispanic communities. These workgroups were
formed by SCPG members as a response to their perception that there was a
lack of understanding, on the part of other CPG members, the state health
department, and the general public, of the extent to which these communities are
impacted by the epidemic. The Latino Workgroup was initiated by Guillermo, a
SCPG member who self-identified as Mexican. The African American
Workgroup was formed shortly after the Latino Workgroup, and was initiated by
several members of the SCPG who self-identified as African American. The
workgroups set as their charge identifying what they argued to be unique HIV-
related needs of their respective communities, and identifying culturally
competent interventions to address these needs. These workgroups also
assumed responsibility for member recruitment, specifically to increase the
number of African American and Latino/Hispanic members on the state and

regional CPGs.

Under the Operating Policies and Procedures of the SCPG, workgroups
and committees were open to all interested individuals, regardless of whether or
not they were members of the SCPG. The CPG members who had inifiated the
African American Workgroup, however, asserted that only African American
individuals should be allowed to participate in that workgroup. Several
individuals who were not African American expressed interest in participating in
the African American Workgroup and placed their names on a “sign-up sheet.”
Derrick, a member of the African American Workgroup and a PLWHIA Task

Force member made the following statement to Veronica, a white woman who

153

had stated to him her intention and enthusiasm about participating in the
workgroup.

This workgroup is about parity. We [African Americans] need our

voices heard. If you aren’t African American, you can’t understand

what it means to be African American and gay or African American

and HIV positive.
Derrick’s statement conveys the sense that identity as an African American is
concerned with knowledge as much as it might be concerned with physical
characteristics. Specifically, there is knowledge gained through the lived
experience of being African American. Derrick’s comments to Veronica are also
illustrative of the erecting of a boundary between communities with race being
the symbolic basis of this boundary. Derrick effectively constructed a category of

“us“ (African Americans) and “them“ (everyone else who is not African

American).

The intention of the workgroup to exclude participants who were not
African American, resulted in the expression of a great deal of anger and
frustration among non-minority individuals who had expressed their intention of
joining the workgroup, and who asserted a legitimate role in the workgroup.
Hope, a white public health nurse affiliated with a. county health agency,
illustrated these sentiments with the following statement:

I’ve worked in this field [public health] for over 20 years. The

majority of my clients are African American. I believe they trust me

and know that I understand their problems. I know that the
community has been stigmatized and discriminated against, but
they know that I’m not like that.

Hope’s remarks indicate that she believes she possesses the appropriate

knowledge to represent African Americans, because she “understands“ her

154

African American clients and because those clients “trust“ her. For Derrick and
other workgroup members, Hope’s “proxy“ knowledge did not make her an
authentic representative for the African American community. Authenticity is

predicated upon knowledge gained from direct lived experience.

Finally, the chairperson of the African American workgroup indicated to
me that it was expected that l assign an African American staff person to provide
administrative support to that workgroup, stating that “We need one of our
people. That’s the only way that they [members] will feel comfortable expressing

their opinions.“ My feeling about this request was, admittedly, similar to Hope’s.

On one occasion, the Membership Committee presented to the SCPG, a
recommendation to accept Aaron’s application for membership. Aaron indicated
on his membership application that he was white, heterosexual, and a PLWHIA.
Aaron had learned of his serostatus some eight years prior, and had, since that
time, been working as a health outreach worker and case manager for a large
HIV/AIDS service agency. Considerable debate ensued over this nomination,
led by two African Americans and one Latino member of the SCPG. The thrust
of the argument is embodied in the following statement made by Guillermo, the
Latino SCPG member:

I look around this table and I see white. We don't need any more

white. What I should see are more brown faces — the communities

that are really affected by AIDS. Now what are we going to do

about that?

Guillerrno’s remarks reinforce the notion that identity is rooted in knowledge.

Specifically, the unique knowledge gained from lived experience. His remarks

155

also underscore that racial/ethnic minorities assert a priority stake in community
planning over other communities. This priority is claimed on the basis of
HIV/AIDS statistics which reveal that, in general, HIV/AIDS disproportionately
impacts racial and ethnic minorities. This means that while the largest number of
reported cases of HIV and AIDS occurs among white individuals, racial and
ethnic minorities account for a larger number of cases, proportionate to their
population size. Thus, deployment of this unique knowledge rooted in
experience is implicated both in assertion of community identity and also in
assertion of priority within the community planning process. Simultaneously,
because Aaron was a PLWHIA, Guillerrno’s statement can be interpreted as
contesting the privileged status of PLWHIAs in community planning relative to
other communities. Guillerrno’s remarks are also illustrative of the erecting of a
boundary between communities with race, specifically race/ethnicity, serving as
the symbolic basis of this boundary. Guillermo constructed a category of “us“

(racial/ethnic minority individuals) and “them“ (individuals who are white).

The boundaries of racial/ethnic minority communities might appear to
some to be relatively clear, based upon criteria such as physical characteristics,
country of origin, or language. My research suggests otherwise. Latifa, a
member of the SCPG, expressed annoyance about being referred to by others
as “African American“ and the assumptions implicit with this categorization:

I don’t think the label “African American“ reflects my experience.

The value system of African American’s isn’t necessarily my value

system. I don’t know if “my people“ came from Africa or not. I’m

black. I’m American. I'm a woman. I’m a Muslim.

While Latifa expressed multiple social identities, African American was not

156

among them. The above remark was made in the context of a discussion
regarding increasing the number of members in the SCPG’s African American
Workgroup. Specifically, she declined an invitation to join the workgroup and

was offering her reasons for doing so.

As another example, HIV/AIDS statistics are published quarterly by the
state health department. Statistics are broken out by a number of demographic
features, including race and ethnicity. Statistics related to race and ethnicity are
presented in the format required by the Federal Office of Management and
Budget (OMB). “Arab“ is not recognized by the OMB as either a racial or ethnic
category. Consequently, the number of cases of HIV and AIDS among
individuals of Arab descent is not reflected in the state HIV/AIDS statistics.
Anaheid, a member of the SCPG, and a woman who emigrated from Iraq,
reacted quite strongly to this after a presentation, by an epidemiologist, of the
state HIV/AIDS statistics. The epidemiologist explained that OMB required that
individuals of Arab descent be included in the “white“ category. Anaheid
responded:

There is no place for me up there. I am not white. I am not of

European descent. My people come from a different culture and

have different values. What you are saying by putting us in like

that, is that we don’t matter.

“Communities of color“ was a term used frequently by CPG members and
in the discourse on HIV/AIDS, both in Michigan and nationally. It was intended

to be inclusive of all racial and ethnic minority persons. The designation did not,

however, resonate with all CPG members. This is illustrated by the following

157

statement made by Lalitha, a CPG member and a woman of Indian descent:
I’m brown so I represent “communities of color.“ I don’t even know
What that is. It doesn’t make sense to lump me in to some category
just because I have more melanin in my skin.

The statements made by Latifa, Anaheid, and Lalitha illustrate that knowledge,

rooted in experience, is implicated in the construction and assertion of

racial/ethnic minority identity. Their statements also highlight the complex and,

often contested nature of community.

Community and Sexual Identity. Sexual identity was a salient marker of
community, at least for men who self-identified as “gay.“ Indeed, in describing
themselves, key informants and CPG members used the word “gay“, rather than
the term “MSM“. Further these men spoke of a “gay community.“ In
commenting on the govemment’s response to AIDS in the early years of the
epidemic, Stuart, who described himself as a gay man, stated:

The gay community took care of its own....ln crisis we did shit we

wouldn’t have been able to plan.... We reacted to a catastrophe

that was killing us and nobody cared. Nobody was doing a damn

thing about it because this thing was happening to gay men. We

did what was normal and learned from each other.
In his remarks, Stuart speaks explicitly of a “gay community“ constructed of
persons whose social identity is predicated upon their sexuality, more precisely,
their sexual identity is their primary social identity. Not all men who have sex
with other men, however, assert a gay identity. For example, one African
American man that I interviewed indicated having exclusively male sexual

partners, but did not describe himself as gay. According to this man, “[ilf you’re a

brother, you keep your shit at home. Like you’re not out in the streets being a

158

faggot doing like this (snapping of fingers)“

While a lengthy discussion of stigma and discrimination of gay and
lesbian individuals is well beyond the scope of this dissertation, individuals who
engage in homosexual behavior, particularly men, have been heavily stigmatized
in US. society ever since homosexuality was defined as a psychiatric disorder.
The gay identity, like the PLWHIA identity, can clearly be considered as symbolic
inversion. A stigmatizing characteristic has been “turned on its head“ to create a

positive identity.

Interviews with four self-identified gay men, and observation of planning
activities, revealed again that knowledge is implicated in the construction and
assertion of a community identity. The Comprehensive Plan Committee, a sub-
committee of the SCPG, had responsibility for identifying prevention
interventions appropriate to meeting the needs of targeted populations. This
committee had about 25 members, including some who were not SCPG
members, but were, instead, affiliated with RCPGs. At one of the first meetings
of this committee, members engaged in a relatively free flowing discussion about
prevention interventions. The discussion eventually turned to strategies for
conducting successful outreach with “hard to reach“ populations, including gay
men who reside in rural communities. Trang, a self-identified Asian gay man
and an outreach worker for an AIDS service organization located in an urban
area, offered the following as an appropriate approach to HIV prevention for rural
gay men:

We need to fund a grass roots gay/lesbian community organization

159

to do outreach and testing. It has to be staffed by gay men. MSM
don’t trust public health and they’re not going to go to any other
kind of agency either.

\MIlow was a white nurse who operated a community health clinic in a rural area
of the state. She has been involved with “AIDS work“ since 1985. Willow
expressed her opinion regarding this matter.

I’ve worked with these guys for over a decade. They come to the

clinic to be tested. They come to us when they're sick because,

they know that we’ll take care of them and because we care about

them. We’re well known in the gay community and we’re trusted. It

doesn’t make sense to start an organization to do the work that

we’re already successful at.
Trang, who was visibly agitated by what he apparently perceived as a challenge,
responded with, “You’re wrong! I know the community better than you do.“
Hope, a white public health nurse, supported \NIllow's position:

She just said that gay men are coming to her clinic and that they

are a trusted resource within the gay community. Willow, how

many of your clients are gay men?
At this, Trang exploded in angen

I’m so sick and tired of all of these middle-age, middle-class, white

public health nurses working in AIDS! They don’t know anything

about this epidemic. They don’t know how it impacts affected
communities.

Willow retorted:
Who in heck do you think has been caring for people with AIDS
since the beginning of the epidemic and donating time and money
to fighting this?! It’s all the middle-age, middle-class, white, public
health nurses!
Willow saw herself as having a legitimate interest in the outcome of the
discussion and believed that she had an important contribution to make to the

discussion. Willow's remarks clearly indicate that she believes she possesses

160

the knowledge necessary to represent gay men because her organization is “well
known“ and “trusted“ within the gay community. For Trang, however, serving gay

men does not endow one with the same kind of knowledge as being a gay man.

Community Rooted in Personal Experience with HIV/AIDS. Knowledge
about the experience of having HIV/AIDS was salient in defining community.
Those in closer proximity to the disease, such as persons living with HIV/AIDS
(PLWHIA), possess stronger knowledge of it than those who were not HN-
infected. CPG members, such as Hope and Willow, who did not (or at least did
not appear to) represent an “at risk“ community, either as defined by CDC or by
participants in the planning process, were sometimes seen as not having a
legitimate role or stake in the planning process. These CPG members were
viewed with suspicion and distrust by those who did represent at risk
communities, and their input into discussions tended to be dismissed as
uninformed, and their contributions to community planning was not
acknowledged. Nevertheless, in constructing a community with a legitimate role
in community planning, those individuals who cannot claim to represent “at risk“

communities, can claim membership in the “affected community.“

Stuart, who was white and self-identified as a gay man, spontaneously
raised the concept of the “affected community“ during my interview with him:

For some reason we have expanded the boundaries of the AIDS
community to include the “affected.“ It’s the only disease category
that we do that with. I don’t think we call, in the recovering
community, the mothers and fathers who have their money stolen
so their kids could get high, “affected“ in the recovery community.
Wrth AIDS, it’s always burgeoned to take on people who felt very
strongly about their role in the epidemic whether they were care

161

givers or funders or interested advocates... volunteers. They felt

very strongly about what they do.... It’s so personal. I believe that

people think that they are there, in many cases, to defend or seek

out some territory for people they're concerned about. I’m thinking

of people who are members of groups like this whose experiences

with people with HIV are very limited. Sometimes powerful

experiences, but Iimited....l think those individuals see themselves

as members of the community and I think they take their roles very

seriously, and they feel that they're in there to be champions of

some cause.
In the context of community planning, personal experience with HIV/AIDS
connotes community by virtue of unique knowledge gained from being a “care
giver or funder or interested advocate,“ and from feeling “very strongly about
what they do.“ Possession of this knowledge legitimizes involvement in
community planning among individuals who claim membership in the “affected
community“ and provides them with some measure of credibility and trust from

members of at risk communities.

CPG members who were not themselves HIV-infected, racial or ethnic
minorities, gay, or who did not “fit“ into one of CDC’s behavioral risk groups,
frequently described themselves as “affected“. SCPG members completed a
questionnaire annually so that MDCH could report to the CDC about the extent
to which the SCPG mirrored the distribution of the epidemic. SCPG members
were asked to indicate which community they represented, choosing from among
the standard CDC risk categories. I noted that several SCPG members wrote in
“affected community“ or a similar response in the “other“ category. When
queried about these responses, it became clear that these individuals perceived
themselves to belong to a community, and therefore to have a legitimate “stake“

in community planning. For example, Silvio, indicated “affected community

162

member“ on the questionnaire. He also indicated that he is “white“ and
“married.“ He did not check any of the risk categories. At this time, I had heard
or seen this designation only a few times previously, so I asked Silvio to explain
what he meant by this:

My daughter was 20 and got married to this man. He died from

AIDS, probably from using drugs. This was before we all knew

what it was. He infected her and she got sick and died two years

ago. She was only 26. I’m a married white guy, straight arrow,

firefighter. But I loved my daughter and I’m here for her.
It was through his daughter’s illness and subsequent death from AIDS that Silvio
perceived himself as “affected“ by HNIAIDS. He has knowledge borne of the
experience of having been “close“ to the disease. The death of this man’s

daughter appears to be a key part of his identity, at least in terms of his

involvement with community planning.

Hope, also indicated “affected communities“ on her membership
questionnaire. As with Silvio, I asked her to explain her choice:

I’ve been a public health nurse for almost 30 years. I saw some of

the first cases [of AIDS] when l was in New York. Since then, I’ve

been dedicated to AIDS. I run the AIDS clinic at the county [health

department]. I do volunteer work for MJAC [Michigan Jewish AIDS

Coalition]. I know a lot of people who have this disease. I’ve lost

many friends.
Like Silvio, Hope has unique knowledge of HNIAIDS because she has personal
experience which brings her close to it. This combined with her “dedication to

AIDS“ allows Hope to assert an identity as part of the affected community.

For individuals who cannot claim to be “at risk“ for HIV, telling “your story

can bestow credibility and legitimacy upon these individuals, by making them

163

part of the “affected community.“ What I refer to as “storytelling“ occurred in a
variety of contexts. Sometimes, the telling was spontaneous in response to a
comment or an accusation from another CPG member. Other times, it resulted

from structured exercises designed to “team build“ among CPG members.

An exercise that I refer to as “The Time Line“ always elicited story telling,
with some individuals telling more elaborate and emotionally intense stories than
others. Each year, the SCPG hosted a “retreat.“ The purpose of this retreat was
to provide SCPG and RCPG members with an opportunity to develop the
knowledge and skills necessary to complete required planning tasks.

Workshops addressed topics such as “Epidemiology 101,“ “Priority Setting
Strategies,“ and “Meeting Facilitation.“ The Time Line exercise was used to kick
off all retreats, by providing an opportunity for CPG members to get to know
each other better. Every year of the AIDS epidemic was recorded on a separate
piece of butcher-block paper. On each piece of paper, key state and national
events that occurred that same year, relevant to HIV/AIDS, were also recorded.
Examples of such events included: Rock Hudson’s death, Magic Johnson
announcing his HIV infection, and passage of the Ryan White Comprehensive
AIDS Emergency Relief (CARE) Act. These papers were posted around the
room in chronological order. Participants were given felt-tipped markers and
instructed to move, as a group, throughout the room to add additional events to
each year, based upon their experience. During this time, participants compared
and discussed the events they added. Finally, participants were asked to

position themselves in front of the year that they first became involved with

164

HIV/AIDS issues. Each participant was then asked to share with all of the other

participants several pieces of information: one or two events that they added to
the butcher block papers; how they became involved in HIV/AIDS; why they

. became involved in the CPG; and one thing they want to personally contribute to

the CPG in the coming year.

\fictoria, a white public health nurse, and a member of the SCPG as well
as an RCPG, shared the following:

My dad passed away a few years ago. I went to get a copy of the
death certificate. It said the cause of death was “acquired immune
deficiency syndrome.“ None of his family knew this. I didn’t really
even know what it meant. He wasn’t gay. He didn’t use drugs. As
far as I knew, he’d never been with a prostitute. I did some
research and came to the conclusion that maybe he got it when he
had cancer surgery. You know, from a blood transfusion or
something.

My brother and I were going through his things and we found all
this porn - magazines, videos. It was gay porn. Some of it was
really shocking. My brother was completely over the edge. He
totally freaked out, like “Dad was no homo!“ Then we found letters -
from men. Not what you expect from a man who was married for
28 years, was in the army, worked the line at GM, and hunted deer.

My dad had been leading a secret life, probably for years. He was

a real “man’s man,“ you know? We decided not to tell the family. I

don’t know if Mom knew anything about it. I don’t know if he was

doing that stuff when she was living or not. He must have been so

ashamed, that’s why he never told us. Maybe if he hadn’t been

[ashamed], things would have turned out differently.
In the months prior to telling her story, Victoria had been quite vocal about the
need to compile more information about bisexual men, including having
HIV/AIDS statistics presented differently, by breaking out men who have sex with
men and women from the MSM category. Few other CPG members supported

Victoria or expressed interest in working with her on seeking information.

165

Subsequent to this event, however, Victoria was encouraged by several CPG
members to establish an ad hoc workgroup of the SCPG to study the issue. The
workgroup successfully lobbied the state disease surveillance section to conduct

a special analysis of HIV/AIDS data, as she had wanted.

Bethany, a 26-year—old white health educator employed by a local school
district was frequently ignored or dismissed by other SCPG members when she
attempted to participate in discussions. On several occasions when Bethany
had asked a question or offered an opinion, she had been openly criticized by
SCPG members as being “naive“ or “uninfomied.“ At the SCPG retreat during
the Time Line Exercise, Bethany had the following story to tell:

When I was in college, I did a study abroad program. That’s when I
met Neils. I was totally crazy in love. He was all sophisticated and
European. We spent all of our free time together....We traveled all
over the place, to some really cool, romantic places... I don’t know
how I managed to pass a single course!

He came back to the States with me after my program was finished
and we moved in together.... He took classes part time and waited
tables at The Earl. He was a terrible flirt, gorgeous, and with that
accent, he made great tips! We went to London together for grad
school - both of us. By the Christmas holiday he was really sick.
We thought it was bronchitis, like he’d had before. We had to take
him to the hospital where we found out he had PCP
[pneumocycstis carinii pneumonia].

We believed that he would get well. That a cure would be found. I
told him that I’d take care of him. He started feeling better...we got
engaged in the spring. We were planning on marrying in the fall,
but we couldn’t decide where to do it. We talked about going back
to the States and maybe to Greece....l lost him by the end of
summer. I keep his ring on this gold chain.

Bethany was very emotional as she told her story. She openly wept when she

was speaking and was embraced by several CPG members at the conclusion of

166

her story. Sometime later, I asked Bethany why she elected to share this
information when it quite clearly upset her to do so. Bethany told me:

I’m a pretty private person. I have only a few very close friends

and, for the .most part, the people I work with know very little about

my personal life. I don’t really think that my personal affairs are

anybody’s business if I’m doing my work. I guess I was tired of

folks not taking me seriously here and I couldn’t take the criticism

anymore.
Bethany is a relatively petite and soft-spoken young woman. I think her stature
and manner, coupled with the fact that she was fairly young, made it relatively
easy for some CPG members to either ignore or dismiss her. Juan, a Latino
SCPG member, had openly criticized her on more than one occasion. In fact, he
had once referred to her openly at an SCPG meeting as a “white bread college
punk.“ Bethany informed me that Juan had approached her later in the evening

in which she had told her story and apologized for his previous behavior, and told

her that hearing her story had made him trust her.

The examples of Victoria and Bethany illustrate that “story telling“ served
to demonstrate close proximity to the disease, thereby affinning that the teller
was a member of a community (i.e., the affected community) with a legitimate
stake in prevention by virtue of the knowledge gained through being affected, at

least indirectly, by HIV/AIDS.

The AIDS Community. While the term “AIDS community“ was to become quite
familiar to me through the course of my research, I struggled to understand its
meaning and its boundaries. Eventually, I came to realize that it was a fairly

broad and sometimes ambiguous construct, encompassing multiple community

167

identities. During my interview with Stuart, an SCPG member, I asked him the
question, “Who is/not part of the AIDS community?“ His response highlighted
this ambiguity:

My first response is that the AIDS community are people with HIV.

Period....l see people who aren't part of the AIDS community as

those who aren’t infected with HIV. We should be talking about the

AIDS community as people with HIV.... I think anybody is quite

likely to call themselves part of it.
I also came to realize that the “AIDS community“ was just as likely to be inclusive
of CBOs or NGOs as it was of at risk individuals. During our interview, Lizzie,
who is the executive directors for a national advocacy organization and one of
the architects of the Guidance, shared her thoughts with me on who is included
in the AIDS community:

In my own mind, I think its a loaded word. And that it’s not, in the

way that I think about it, terribly useful... [when] people talk about

the [AIDS] community in Washington, I think its ridiculous. There

isn’t one. There’s a lot of different organizations, with a lot of
different views and a lot of different constituencies and they

collectively, I suppose, make up the community.
Community planning is intended to be a collaboration between the CPG,

representing “communities,“ and the state health department (i.e., the funder).

All members of a CPG may not themselves, be direct representatives of at risk
communities, but may instead be organizations that provide HIV/AIDS services
or engage in advocacy on HIV-related issues. CPG members tended to consider
themselves to represent the AIDS community. CPG members tended not to
consider the MDCH and its representatives, to represent the AIDS community.
Thus, the AIDS community was defined through opposition to the state health

department. The MDCH was the “Other.“

168

Nowhere is this highlighted more clearly than in the context of
“concurrence.“ The community planning Guidance requires that CPGs review
the state’s funding application and associated budget to assess the extent to
which that application is responsive to the needs and priorities identified in the
prevention plan(s). This review process is referred to, colloquially, as

“concurrence.“

CPGs could submit letters of non-concurrence to the CDC if they found
that the funding application included activities or interventions which were not
supported in prevention plans. Letters of non-concurrence could result in
restrictions or conditions being placed on funding awarded to a state. State
health departments could request funding to support activities which were not
described in the jurisdiction’s prevention plan, if they deemed these to be
essential components of a sound response to HIV/AIDS. In this circumstance,
the health department was obligated to submit a letter of explanation as part of

their funding application.

On one occasion, MDCH’s application to the CDC for HIV prevention
funding, included a request for funding to support the development and
implementation of a behavioral intervention specifically targeted to HIV-infected
persons. At this time, HIV-infected persons were identified in the Statewide
Comprehensive Plan for H! V Prevention (the Plan), prepared by the SC PG, as a
population to be targeted for HIV prevention efforts. At the meeting of the SCPG
during which “concurrence“ was the primary agenda item, staff from MDCH

presented the funding application to the SCPG. Because HIV-infected persons

169

were not included as a target population in the Plan, their presentation included
epidemiologic and behavioral data to justify the funding request. Questions and
requests for clarification posed by SCPG members were answered by MDCH

staff.

Discussion on this particular component of the funding application was
quite heated. One SCPG member, Sarah, a health educator affiliated with a
rural community-based organization, stated:
This money shouldn’t be used for people who are positive. That’s
what Ryan White is for. This is just siphoning off scarce prevention
dollars to support care.
Another SCPG member, remarked:
What’s the point? What can prevention do for HIV-positive people?
These dollars are supposed to be used for people at risk, not for
positives.
This remark seemed to incite members of the SCPG who were PLWHIAs to '
support the MDCH’s position, and several argued strongly to support the
application. Sam, a PLWHIA and member of the SCPG, argued passionately to
support the funding request, insisting that:
You get this virus from somebody else with the virus. You don’t get
it from somebody who is negative. If prevention was working for
PWAs, this epidemic would be over. We have to provide primary
prevention services to people who are already infected. It is
irresponsible not to.
Eventually, the support of PLWHIA members persuaded most members of the
SCPG that prevention targeted to HIV-infected persons was an appropriate and

important use of resources. Nevertheless, the SCPG declined to endorse the

funding application, voting instead to write a letter of non-concurrence. The

170

community co-chair for the SCPG repeated the motion for non-concurrence for

the record:

The SCPG will write a letter of non-concurrence because the

Department requested funding for prevention for HIV-positive

people, and HIV positives are not included as a priority population

in the Comprehensive Plan, and because the Department included

HIV positives in the application without adequately consulting the

community (emphasis mine).

After the vote was taken and the motion for non-concurrence had passed,
Irene, a SCPG member who was also an employee of a county health agency
stated, “I think if this had come from the [AIDS] community instead of you [the
Department], we could have supported it, even though it isn’t in the Plan. “ In this

circumstance, the AIDS community was inclusive of the entire membership of the

SCPG.

The concurrence process illustrates the relational and highly situational
nature of the AIDS community. CPGs are constituted of multiple communities
who, in opposition to the MDCH, acted as a single community, the “AIDS
community.“ In this case, the AIDS community was inclusive of representatives
of CBOs and NGOs, which in other contexts, were not considered
representatives of at risk communities. In opposition to the health department,
however, they were considered (and considered themselves) part of the AIDS
community owing to their greater proximity to the disease when compared with
MDCH. CBOs and NGOs work directly with clients, including PLWHIAs and
other “at risk“ individuals. MDCH does not, so its representatives are perceived
to be lacking in the experiential knowledge that is the basis for construction of a

community identity. The process of concurrence allowed the AIDS community to

171

both articulate and reinforce its identity, vis—a-vis the MDCH.

As a footnote to the process of concurrence described above, most SCPG
members were sufficiently persuaded by the arguments set forth by the PLWHIA
members to recommend that the MDCH set aside resources to conduct research
regarding the behaviors, attitudes, and other determinants of HIV risk among
PLWHIAs as a first step toward developing prevention interventions. These
were precisely the activities which the health department had requested, but
which the SCPG had declined to endorse. This recommendation took the form
of a motion which was voted upon by the SCPG, and which passed. In this
instance, the recommendation was made by a representative of the AIDS
community, so it was viewed as legitimately serving the interests of the
community as opposed to the health department. For this reason it garnered the

support of the SCPG.

Participants in the planning process defined themselves and others in a
wide variety of ways, using a range of symbolic markers, depending on context.
However, an important theme emerged through my exploration of how
participants in the planning process understood, experienced and articulated
community. In the context of interactions which had material consequences,
such as those which affected the allocation of resources (e.g., “concurrence“),
proximity to the disease became a primary characteristic for defining and
expressing community. More accurately, knowledge about the experience of
living with HIV/AIDS was salient in defining community, vw'th those in closer

proximity to the disease, such as persons living with HNIAIDS (PLWHIA),

172

possessing stronger and more valued knowledge of it. A “hierarchy“ of
communities was the result (i.e., PLWHIA, racial/ethnic minorities, gay men,
affected community). Those communities in closer proximity to the disease had
a greater “stake“ in prevention relative to those in more distant proximity. They
perceived their knowledge of HIV/AIDS issues to be superior in comparison with

knowledge possessed by communities more distant from the disease.

Authenticity

My research findings suggested that authenticity is a key concern for
participants in the community planning process. Participants evaluated
authenticity on the basis of possession of characteristics which serve as key
symbolic markers of community. Those individuals who possess (or who are
perceived to possess) these characteristics were considered to be authentic
community representatives. Stuart’s comments on representation illustrate this
point:

Allegiances are being formed by characteristics.... We have these
benchmarks. How many Asian Americans are on your committee?
I’m all for [committees] reflecting the population. I don’t think
characteristics alone equal the ability to represent your
community....We usually say “there is an African American woman
who is willing to come and sit.“ We then make the assumption that,
one, she has valuable input for us, and two, that she will have the
interest and ability to carry through.

I think that the assumption is that once you have heard from that
individual, let’s say there is an Asian American woman, and you
really have an investment in hearing from them, and you’ve heard
all you want to hear, you know, it meets your needs. So there may
be a real easy reason to say, “oh, we’ve heard from that
population.“ By just picking characteristics, I think it sets us up for
that....l think it’s a little dangerous sometimes because I don’t think
it truly represents....l have not been in one of those meetings where
white gay men have been represented. I have yet to hear anything

173

come out of somebody’s mouth that reflected my personal feelings.
And so there is such a myriad of opinion. You know, how could
anybody represent anybody. What you’re really talking about is
your own personal perspective. Perspective does not equal
representation. It’s just your perspective.

In my interview with Bob, another of my key informants, he described to me the
criteria he believed should be used in identifying CPG members who are
authentic representatives of their communities:

...if I get an African American person at the table...people don’t get
infected because they’re African American and it’s therefore not
African Americans that we want to stop from getting this disease. It
is particularly, if you look at the epidemiology... African American
men who have sex with men that are getting infected. So, if I’m
really trying to get at that community, I don’t want just any African
American sitting at the table, I want an African American MSM who
has some social network connections to other men who have sex
with men.... How you ever devise a membership process that does
that, I don’t know. But to me, if you really want to get
representativeness, [that] is what you do.

Ultimately, I found the definition of authenticity to be imprecise.
Evaluation of authenticity, or rather the extent to which a person was an
authentic representative of a particular community, was highly subjective. A
person may perceive him/herself to be an authentic community representative.
Others may also perceive that person to be an authentic representative.
Nevertheless, the way that each person defines and understands the community
ostensibly represented may not be congruent. To illustrate this point Bob, who
identifies himself as a gay man, remarked:

I’ve had some people refer to me, because I do AIDS work here in

the community, as a leader in the gay community... And yet, there

are many aspects of gay life in this town that I don’t identify with. I

don’t go to the bars, so I don’t identify with that experience. So if

you’re looking at risk profiles, its people who go to the bars that
have the highest risk profiles. I don’t think I represent them. I can

174

certainly tell you what I know about that population of

individuals....The whole issue of representation gets really

complicated in my mind.
Authenticity is evaluated at one, largely superficial, level on the basis of
possession of certain characteristics. Even so, authenticity is ultimately linked

with knowledge because it is experienced-based knowledge which forms the

basis of social identity.

Due to the lack of precision in defining authenticity in representation,
authenticity was sometimes questioned, and community identity contested.
Authenticity of representation was most often contested in the context of matters
related to making decisions about prioritizing one population over another or
allocation of resources. For example, health departments are required to provide
a detailed budget associated with the CDC funding application to CPGs for
review and comment. This is part of the concurrence process. The specific
agencies that MDCH selected to provide prevention services were often

questioned and debated.

On one occasion, the funding application included an allocation for a
specific community-based organization is described as a “gay/lesbian community
organization.“ The MDCH intended to award resources to this organization to
provide services to African American MSM. There was disagreement among
SCPG members regarding the appropriateness of this decision. Three SCPG
members in particular debated the proposed award: Chris, a white man who
self-identified as gay; ShaJuan who identified himself as African American and

gay; and Leo, who also identified himself as African American and gay. Leo was

175

employed by the CBO managed by Chris.
Chris: As a gay man, I know that prevention has to be provided by
gay organizations to be credible to the gay community. Our
surveys show that gay men prefer to receive services from gay
agencies.
ShaJuan: African American men don’t want to go to a gay agency.
People will think that we’re queer. Services for African American
gay men have to be provided by an African American CBO.

Chris: Our surveys show that African American men do want to get
services from gay organizations.

ShaJuan: I don’t care what your survey shows. I am an African

American gay man and my experience is that our community

doesn’t want to be associated with white gay agencies out in the

suburbs. They want services in their community by their

community.

Leo: I agree with ShaJuan. Prevention services for African

American MSM should be provide by African American

[community-based organizations].

ShaJuan: You don’t know anything about it!
In this situation, Chris clearly believed that he was acting as an authentic
representative of the gay community. He cited his experience as a gay man, and
survey findings to support his expertise in this regard. For ShaJuan, however,
race was a more important indicator of authenticity, and thus asserted that his
expertise, based on being African American as well as being gay, trumped Chris’
expertise. Even though for ShaJuan, race took priority over sexual identity in
defining authenticity in the context of his exchange with Chris, he disregarded
this in his exchange with Leo. Because Leo was employed by the agency
managed by Chris, an organization perceived by ShaJuan as a “white agency,“

he was not viewed by ShaJuan as an authentic community representative. In

this regard, ShaJuan was able to dismiss Leo because Leo lacked the

176

knowledge that accurately represented the interests and needs of gay African
American men. Ultimately, ShaJuan and others withdrew their objections to the
funding of this agency when the health department agreed to exclude African

American gay men from the scope of service of the disputed contract.

After the close of the meeting, Andrew, the SCPG co-chair and director of
the MDCH HIV/AIDS program, pulled ShaJuan aside to talk with him about this
exchange. I was privy to the conversation. In particular, Andrew questioned
whether ShaJuan believed his position to be defensible and fair, given that Chris
had both data and experience, based upon years of service to African American
MSM. ShaJuan reflected on this for a moment and replied, “I guess maybe it
wasn’t so fair. I’ve been criticized by people for not being African American

enough or gay enough.“

In community planning, authenticity is equated with possession of certain
characteristics (e.g., HIV infection status, race). Those individuals who possess
a certain characteristic or constellation of characteristics, are perceived to be
authentic community representatives because they are presumed to possess
unique knowledge rooted in experience. Experiential knowledge was valued by
CPG members, above all other types of knowledge. As an example of this,
disease surveillance data were repeatedly discounted by CPG members as
inaccurate. One year, an MDCH epidemiologist made a presentation to the
SCPG on the annual HIV/AIDS statistical report. This report described the
prevalence and incidence of HIV and AIDS in every county of the state. In

summarizing the impact of the epidemic geographically, the epidemiologist

177

indicated that:

Ninety-one percent of the cases, both incident and prevalent, occur

in counties which account for sixty percent of Michigan’s

population. In these counties, ninety percent of the cases occur in

the urban centers.
The epidemiologist was, in effect, saying that HIV/AIDS had relatively little
impact in Michigan’s rural communities. Dara, a white SCPG member affiliated
with a county health department located in a rural area of the state, disagreed
with these data:

I think that the statistics undercount AIDS in rural communities. I

work in a health department and see all kinds of people at great

risk for HIV. The problem is that they don’t get tested because of

confidentiality issues and because of stigma. There is a

smoldering epidemic in rural communities. Just because your data

doesn’t show it doesn’t mean it isn’t there.
Like ShaJuan in a previous example, Dara asserted knowledge superior to that
possessed by the epidemiologist by virtue of the fact that she lived and worked in
a rural community, i.e., she was an authentic representative of a “rural
community.“ As a representative of the health department, I occasionally found
this tendency to discount or entirely dismiss other forms of knowledge,
particularly knowledge obtained through more systematic and/or “scientific“
means, both troubling and frustrating. So too did CPG members who found their
“input“ discounted because they did not represent a particular community or
were not perceived as authentic representatives of that community. Dara and
several other representatives from rural communities successfully lobbied the
health department surveillance unit to prepare a special analysis of HIV/AIDS in

rural areas, which utilized HIV/AIDS case statistics, as well as service data from

primary care and case management services. This analysis did not bear out the

178

suspected undercounting of HIV/AIDS cases in niral communities.

One of my key informants, Bob, managed a community-based
organization that provided services to African American MSM. Like Chris, Bob
(who is white) had experienced criticism from some African American CPG
members relative to the capacity of his agency, in terms of cultural competence
and knowledge of the community, to provide prevention services to this particular
community. Bob commented on these criticisms:

As an organization, we are not an African American organization,

yet forty percent of the clients are African American, and forty

percent of my staff are African American, and forty percent of my

board are African American. Can the NAACP better speak for

those African American’s that we serve than we can? I don’t think

so. But yet, you’d look to the NAACP and say that they should be

better qualified, and no, because there is all that unique experience

that’s... not there. Does that spokesperson have to be another

African American? I mean should I say an African American

member of my staff can speak for them but I can’t? I've been here

ten years and that staff member has been here two years. Who

has the better longitudinal picture? That’s... the trouble that we get

into when we define representation as sitting at the table. I think

that’s where the problem is.

The examples of Dara and Bob reveal that in community planning, knowledge
rooted in experience specifically direct and lived experience is valued over other
types of knowledge, particularly scientific knowledge. In short, subjugated

knowledge was valued above discursive knowledge.

Discussion
The concept of community is vastly more complex than is acknowledged
in the community planning Guidance. Communities, as they are defined in the

Guidance, do not appear to have much congruence with communities that are

179

constructed and experienced by those who live within them. Risk, as a symbolic
marker for community, appears to hold little meaning for individuals involved in

the planning process.

My research findings indicate quite clearly that sexual identity is a relevant
symbolic marker of individual and community identity for some, but not all MSM.
Indeed, many of my key informants described themselves as “gay.“ Sexuality for
these men appeared to be quite central to their personal identities and to their
identification or affiliation to a particular community (i.e., the “gay community“).
However, most of these informants also acknowledged and highlighted

tremendous variation among so-called MSM in terms of their social identities.

My research findings also suggest that injection drug use, in and of itself,
is not a sufficient basis for a communal identity. Key informants explicitly denied
the existence of anything that could be considered a “community“ among
individuals who inject illegal dnigs. Further, they highlighted a wide range of
characteristics and factors which likely inhibit development of a communal
identity among those who inject illegal drugs, including drug(s) injected,
socioeconomic status, race/ethnicity, gender, and educational level. It is
interesting to note that “junkie unions“ have been established by IDUs in the
Netherlands, Switzerland, and other countries where use of injectable drugs for
non-medical purposes is less stigmatized than in the United States. These
unions function to obtain legal protections for users, facilitating access to health
services, influencing public policy and proving mutual support to users (Altman

1994; Jose et al. 1996). It is possible, in these contexts, that injecting drug use

180

serves as a basis for a communal identity.

My research findings also did not support the existence of a
“heterosexual“ community. In general, the only context in which CPG members
acknowledged heterosexual behavior was in completing membership

questionnaires relative to sexual orientation (rather than risk of sexual partner).

As defined through policy, community based upon HIV risk tends to be
conceived of as both monolithic and static. People are members of a single
community and remain so, regardless of changes in behavior or circumstances.
The findings of my research suggest, however, that community is multifaceted
and dynamic. One or more symbols may be claimed as markers of a
community. Some symbols may be more important than others to articulate,
depending upon the situation. Context plays an important role in determining
which symbols are called into play in defining boundaries and indicating
community membership. Claimed membership to a particular community may
also be situational with individuals claiming membership in several communities,

in turn, or simultaneously.

My research did suggest that HIV serostatus, race/ethnicity, sexual
identity, and personal experience with HIV/AIDS, also are important symbolic
markers of community. The first three of these characteristics were associated
with communal identities which preceded community planning, and are
expressed in contexts independent of community planning. The remaining

characteristic - personal experience with HIV/AIDS - is more peculiar to

181

community planning, and is implicated in the construction of the affected

community.

Unlike H lV-infection status, race/ethnicity, or even sexual identity, the
symbols that allowed a person to claim and express membership in the affected
community are not readily apparent. Ritual served a key function in this regard.
Specifically, “storytelling“ was a primary means by which the boundaries of the
affected community were expressed and maintained. Storytelling establishes
and reinforces the boundaries of a distinct community. It also enables the teller
to establish credibility and legitimacy among other CPG members, particularly in

relation to those who can claim membership in “at-risk“ communities.

Ultimately, community identity is concerned with knowledge. Specifically,
identity is an expression of knowledge obtained through lived experience.
Deployment of knowledge both expresses identity and reinforces it. Experiential
knowledge is preferentially valued in the context of community planning on the
basis of distance from the disease. Individuals who are “closer“ to the disease,
due for example, to being HIV infected, possess knowledge which is more
valued by the participants in community planning when compared with

individuals who are more distantly located from the disease.

Authenticity is linked with knowledge, which in turn is linked to identity.
Authentic community representatives possess “truer“ knowledge about a
community by virtue of their lived experience. The community planning policy

serves as a framework and a mechanism through which knowledge rooted in

182

experience (i.e., subjugated knowledge), has greater value than scientific
knowledge (i.e., discursive knowledge). This represents an inversion of the
status quo wherein discursive knowledge is more valued than subjugated forms
of knowledge. This inversion is achieved because of the emphasis placed upon
ensuring the participation of “at-risk“ communities in the planning process,
coupled with ensuring that “funding follows the epidemic,“ in terms of the
allocation of resources by risk group. Emphasis by the CDC on these two
factors in evaluating the “success“ of community planning has contributed to the
notion held by many involved in community planning that experiential knowledge
is superior to scientific knowledge and has more importance with respect to

planning for HIV prevention.

Social identity is concerned with power and deployment of knowledge and
is implicated in the exercise of power. According to Foucault, access to, and
exercise of power, is predicated upon the possession of, and the ability to deploy
knowledge. In Foucault’s view, discursive knowledge is generally more valued
and perceived to be superior to popular or subjugated knowledge. The
community planning policy, provides a framework and mechanism through which
subjugated knowledge becomes more highly valued and attains superiority
compared with discursive forms of knowledge. The experience of living as a
person with HIV-infection or AIDS, for example, imbued CPG members with a
unique and valued form of knowledge, so far as HIV/AIDS issues and, more

specifically, community planning were concerned.

During the course of my research, I recorded PLWHIAs asserting superior

183

knowledge and claiming greater authority relevant to HIV/AIDS issues. This
assertion was predicated upon their representing “prevention failures.“ In other
words, prevention efforts had not effectively served PLWHIAs well, and they
possess the unique knowledge to highlight the inadequacies of prevention
efforts. By the same token, they asserted a priority stake in community planning
relative to preventing future transmission. This was expressed clearly in my
findings \M'thin the context of the discussions and arguments about funding to

support primary prevention interventions targeted to HIV-infected persons.

Both racial/ethnic minority and gay communities asserted unique
knowledge and claimed authority relevant to community planning. While
subjugated knowledge (i.e., the experience of living as a gay man or a
racial/ethnic minority), served as the basis of this claim, the claim was expressed
and reinforced by employing discursive knowledge. Specifically, both used
epidemiologic data to support their claims for superior knowledge and greater
authority within the context of community planning. This illustrates that
communities, in attempting to access power, use whatever tools are available to
accomplish their goal. Using discursive forms of knowledge as that tool both

serves to reinforce community identity and facilitate access to power.

The affected community was unable to claim unique knowledge relevant
to community planning on the basis of lived experience. Instead, the affected
community “borrows“ knowledge about HIV/AIDS issue from other communities.
In order to claim a legitimate stake and some authority in community planning,

they have to access knowledge by virtue of their association with someone who

184

does possess that knowledge.

Within the context of community planning, communities are “ranked”
relative to each other by virtue of proximity to the disease. PLWHIAs are at the
top of this hierarchy, while the affected community appears at the bottom. The
notion of ranking is tied to knowledge, specifically the degree to which that
knowledge is valued. The knowledge possessed by PLWHIAs has more value,
in the context of community planning, than does that possessed by affected
community representatives. The knowledge possessed by public health
professionals (discursive knowledge) is perceived, at least by CPG members, to

have the lowest value.

Subjugated knowledges were not equally valued. Individuals who
possessed more highly valued subjugated knowledges (i.e., those which
represent nearer proximity to the disease), had access to, and exercised a
greater degree of power in community planning compared to those individuals
who possessed knowledges which were less highly valued. Such was the case
when PLWHIAs successfully argued for funding to support research regarding
the prevention needs of HIV-infected persons, or when ShaJuan and others
successfully pressured the health department to restrict the scope of service of a
single prevention agency, such that it could not explicitly target African American

gay men.

Communities are defined relationally, and the boundaries of a community

are the embodiment of that community‘s identity. Communities symbolically

185

assert these boundaries when those boundaries are in some way challenged,
undermined, or weakened. Boundaries must be maintained if both individual
and communal identity is to be maintained. Implicit in this is the idea that
communities are essentially self-interested. That is, assertion of boundaries is a
means to maintain, advance, or protect the ideas, interests, and agendas of the
members of that community. In the context of community planning, communities
were concerned first and foremost, with ensuring that they receive recognition as
“at risk“ and, with that, priority for funding for HIV prevention services.
Communities were also concerned with securing and maintaining social status
and associated rights and benefits, such as the opportunity to participate in
activities that would influence policy and provide them with preferential access to

policymakers and elected officials.

Boundary maintenance is both the expression and exercise of power.
Boundary maintenance is accomplished through the deployment of knowledge.
Community planning presents many situations where knowledge is deployed as
a tool in the service of power. For example, PLWHIA community representatives
argued strongly and successfully that PLWHIAs were both a legitimate and
important audience for HIV prevention programming, and as such, should
receive priority in funding decisions. The argument was grounded in their expert
knowledge that as PLWHIA “[w]e know why prevention didn’t work for us.“ In
doing this, PLWHIAs not only reinforced a communal identity, but also reinforced

the social status of the PLWHIA community.

Fluidity in community identity plays an important role with respect to the

186

expression of knowledge and exercise of power. My research findings
demonstrate that individuals have multiple social identities. The context and
manner in which they choose to express membership in one community or
another is related to context. More specifically, “shifting“ of identities, such as
exemplified by ShaJuan in his interactions with Chris and Leo, represents a
strategic use of knowledge in the service of power. One can claim and assert
membership in those communities which have relatively higher social status.
That relatively higher social status is predicated upon the possession of a
particular type of knowledge which is more valued, or is viewed as superior to

other knowledge.

My research illustrates that authenticity is a key concern for participants in
the community planning process. Moreover, authenticity is inexorably linked to
knowledge. Authenticity in representation goes to the credibility of the source of
knowledge. My research illustrates that authenticity in representation is
questioned or contested when the position of another individual or community is
threatened through deployment of purportedly expert knowledge. lmpugning
authenticity is a way of undermining the credibility of knowledge and, hence,

undercutting power.

Summary

This chapter was concerned with community, as it is understood,
constructed, and expressed at the local level, by those involved in community
planning. Knowledge as it is implicated in construction of social identity was

addressed as well. Finally, this chapter examined power and knowledge as they

187

are implicated in construction and reinforcement of community identity. The next
chapter will serve as the conclusion to this dissertation. Major findings of my
research will be summarized. Key contributions to the field of anthropology will
be addressed. Implications of this research related to the community planning

process, specifically, and AIDS public policy more generally, will be highlighted.

188

CHAPTER 8
CONCLUSIONS
Introduction
In this chapter, I present a summary of key research findings. I also
present a discussion of the contributions of this dissertation research to the field
of medical anthropology as well as implications of this research for HNIAIDS
prevention efforts. The limitations of the findings are discussed and

recommendations are made for future research.

Summary of Research Findings

Community planning for HIV prevention is a product of the historical and
political context of HIV/AIDS in the United States. More specifically, this policy
was a response to more than a decade of inattention and indifference on the part
of the federal government, towards a growing public health crisis. The policy
itself was conceived and drafted by a coalition comprised of public health
professionals, community activists, and committed elected officials, all of whom
recognized that public health efforts are strengthened through the engagement

of communities served by these efforts.

In the early years of the epidemic, the gay community mounted ‘
substantial community mobilization efforts. These became an extremely
effective political force. These mobilization efforts were instrumental in speeding
up federal processes for approval of drugs to treat HIV/AIDS, obtaining legal
protections for discrimination because of HIV infection, and in obtaining federal

funding to support research and prevention efforts. The community planning

189

 

initiative was modeled after these efforts and now guides HIV prevention efforts

across the United States.

This dissertation examines community planning for HN prevention as it is
implemented in Michigan. My research focused on the notion of community. I
examined how community is defined and expressed through policy, as well as
how community is understood and articulated by individuals involved in the
community planning process. The extent of congnience between policy and
“lived“ definitions of community were examined. My research also addressed the
uses of community. More specifically, I explored use of community as social

identity, and as a tool in the service of power.

Community planning for HIV prevention, as policy, is articulated in a
document entitled Supplemental Guidance on HIV Prevention Community
Planning for Noncompeting Continuation of Cooperative Agreements for HIV
Prevention Projects. It is implemented via state health departments, as a
condition of federal funding. Community planning groups are the central focus of
the community planning initiative. Community planning groups are convened by
state health departments and must be comprised of members who are
representatives of communities impacted by HNIAIDS. Community planning
groups have responsibility for developing statewide plans for HIV prevention
efforts. Federal funding must be allocated in accordance with these plans.

Referring to a group of people as a “community“ implies that they are “like

thinking“ about the world, and that they share common values, norms, beliefs

190

and attitudes. In the context of federal policy, community is conceived of as
synonymous with HIVrisk, which is an epidemiologic construct. HIV risk is
defined on the basis of specific behaviors associated with HIV transmission. In
this way, epidemiology has been used to construct social groupings rather than
having discovered “natural“, existing social groupings. From the Foucaultian
perspective, through this policy initiative, human beings are made into subjects
through dividing practices, using the construct of HIV risk. Behavior serves as
the symbol which marks the boundary of each “community.“

I examined the extent of congruence between the concept of community
as defined through policy, and of community as it is constructed and expressed
by participants in the community planning initiative. My research findings
demonstrate that community, as conceived of in policy, bears little resemblance
to community as it is lived and understood by those involved in the planning
effort. The notion of HN risk behavior as the symbol which marks the
boundaries of, and between communities, does not resonate with those who
participated in the community planning process. HIV risk, predicated upon
behaviors, does not serve as a sufficient basis for producing, expressing, or
maintaining a communal identity. Indeed, key informants had clearly reflected
upon the definition of community as defined in policy, and were often quite

critical of both its accuracy and utility.

Simply put, participants in the planning process think about community
differently. By and large, HN risk is not a symbol which holds meaning for

participants in the planning process, in so far as denoting community. I identified

191

several key symbols that had salience and meaning for participants relative to
construction of a community identity. Expression and manipulation of these
symbols served as the means by which participants in the planning process
turned themselves into subjects. I found that HIV serostatus was important with
respect to constructing community identity. My research also suggested that
race, particularty black versus non-black, was used to distinguish community.
Sexual identity appeared to serve as a symbolic basis for community identity, at
least in regard to men who self-identified as “gay.“ Finally, personal experience
also emerged as an important symbolic marker of community. While HIV
serostatus, race/ethnicity, and sexual identity were associated with community
identities which preceded, and are independent of community planning, personal
experience with HNIAIDS is unique to the context of community planning as it

relates to construction of community identity.

Proximity to disease emerged as a key theme relative to expression and
articulation of community and is concerned with personal knowledge/experience
with HIV/AIDS. In the context of community planning, experiential knowledge
about HNIAIDS is valued. Knowledge reflective of closer proximity to disease,
such as knowledge possessed by PLHWIAs is more highly valued, and is
perceived as superior by those participating in community planning, when
compared to knowledge which represents a more distant relationship to the
diseaSe, such as knowledge possessed by public health professionals. Thus, a
hierarchy of subjugated knowledges existed. This was in turn, associated with

the creation of hierarchy of communities. PLWHIAs were positioned at the top of

192

this hierarchy.

In community planning, subjugated knowledges (i.e., those rooted in
experience) had greater value than discursive forms of knowledge, particularly
among CPG members. This inversion of the status quo was possible due to the
policy itself, or more accurately, how the policy was interpreted through
implementation. The participation of “at risk“ communities received emphasis in
evaluation of the extent to which health departments had complied with the
policy directive. Further, resource allocation across communities defined by HIV
risk, was the primary measure by which the success of community planning was
determined by the CDC. These two factors contributed to, and reinforced the
superiority of subjugated knowledges compared with discursive forms of
knowledge.

The policy perspective on community (i.e., based on HIV risk) tends to
portray community identity as static and one dimensional, regardless of changes
in values, beliefs, attitudes, or behaviors. Through my research, I have
illustrated that people may hold and assert multiple community identities, often
simultaneously, depending upon context and need. Community identity is
ultimately concerned with knowledge, and knowledge is implicated in the
exercise of power. The fluidity of identity is an expression of the exercise of
power. A person may use any and all symbolic tools available to best achieve
his or her goal. In some circumstances, this includes sometimcs utilizing
discursive forms of knowledge, sometimes in combination with subjugated forms

of knowledge.

193

Ultimately, community identity is concerned with knowledge. Specifically,
identity is an expression of knowledge obtained through lived experience.
Deployment of knowledge both expresses identity and reinforces it.
Simultaneously, deployment of knowledge is the exercise of power. Because
experiential knowledge is preferentially valued according to proximity to the

disease, individuals who claim to be closer to the disease are in positions of

greater power.

Contributions of the Dissertation Research

Through this dissertation, I have demonstrated that policy analysis is a
legitimate and important field for research within anthropology. Policy is a
central and important instrument of social organization and governance,
particularly in Western societies. With regard to health related matters in
particular, policy has important consequences for individuals, as well as for
communities. Policy influences who has access to health care and how they are
able to access it. Policy influences the types and qualities of services that are
available. Importantly, policy influences - in both positive and negative ways -
structural forces such as poverty that create inequity and influence health status.
For these reasons, policy should be a particularly relevant area of research for

medical anthropologists.

In approaching the “problem“ of community planning from a critical
interpretive perspective, my research has made more transparent the
assumptions about human behavior which currently dominate HIV prevention

efforts, including HIV prevention-related research. In using the language of HIV

194

risk to construct and define community, the community planning policy is
revealed to be predicated on a cultural bias toward individualistic models of
research and intervention. HIV risk is concerned exclusively with individual
behaviors. In this way of thinking, if we focus simply on the behavior, we can
provide individuals with the education andithe tools to change those behaviors
which result in transmission of HIV. At the same time, a complete lack of
appreciation for, and understanding of, the structural factors (e.g., poverty,

political instability, racism) that produce an environment of risk is revealed.

My dissertation research also illustrates that practices of representation
shape the terms of, and participants in policy debate. Policies influence the way
people both constnict and conduct themselves they are the “guidelines“ that
motivate and legitimate behavior. Federal HIV/AIDS policy is significantly
implicated in the construction of community insofar as policy uses risk as a
framework to construct and define community. Simultaneously, my research
reveals that policy is implicated in the construction of new forms of identity, as
exemplified by the emergence of an “affected community.“ In order to legitimize
their participation in community planning activities, some CPG members had to
constnict an identity which allowed them to do so. My research also revealed
that policy both mediates and legitimates authority in policy debate. CPG
members who could claim to be in closer proximity to the disease could claim
greater authority and exercise their power. This was best illustrated in the
context of decisions about resource allocation or program planning, such as

when a contingent of PLWHIAs persuaded the SCPG to endorse funding for

195

prevention efforts targeted to HIV-infected persons. These findings suggest that
policy makers and public health practitioners should think both critically and
strategically about community, because gaining a better understanding of
community will ensure appropriate or “correct“ representation in planning and
decision-making, and will also determine, ultimately, the success or a failure of a

policy in terms of it garnering support of the community for whom it is intended.

Foucault discussed two types of knowledge implicated in the exercise of
power, discursive, rooted in the sciences, and subjugated, rooted in local context
and experience. My research illustrated use of both forms of knowledge.
Discursive knowledge was most cleariy apparent in the notion of HIV risk, and in
the requirements that CPGs use epidemiologic and similar forms of “data“ to
identify HIV prevention priorities. Subjugated knowledge was implicated in the
construction and expression of community identities (e.g., African American,
PLWHIAs). While Foucault presented a dichotomy of knowledges, i.e.,
discursive and subjugated, my research findings suggested a plurality of
knowledges which were overlapping. Community identity was predicated on
knowledge rooted in lived experience, such as being an African American.
Community identity was simultaneously predicated upon knowledge rooted in
proximity to disease. While Foucault viewed discursive knowledge as generally
having greater authority, my research revealed an inversion of the status quo,
whereby subjugated knowledges were perceived as having greater authority than
discursive knowledge. Knowledge possessed by PLWHIAs, who were in closest

proximity to HIV/AIDS above all other communities, was superior to all other

196

knowledge. In this way, a hierarchy of subjugated knowledges emerged, which

resulted in communities being ranked relative to each other.

It is important that policy makers and public health practitioners
acknowledge, understand, and critically examine the plurality of knowledge that
is deployed because this has important implications for the success of policy in
achieving its aims. Community planning is intended to be an evidence-based

process, wherein empirically generated knowledge drives decisions about

Trink—‘s—zr-f‘f 1‘

allocation of resources, and the populations that will be recipients of these
resources as well as the types of interventions that will be supported. Other
forms of knowledge (i.e., subjugated) rooted in experience are intended to
provide information that will help to “tailor“ prevention efforts by illuminating the
norms, values, and cultural nuances that interventions must take into account if
they are to be effective. In the context of community planning, subjugated
knowledge achieves more legitimacy and higher authority than discursive forms
of knowledge. CPG members tend to dismiss epidemiological data as
“inaccurate“ in situations where these data did not support a particular position is
illustrative of this. This sets the stage for conflict between policy makers, public

health practitioners, and the communities that they intend to serve.

In the case of community planning, elevation of subjugated forms of
knowledge above discursive forms of knowledge, has the potential to result in
CPGs identifying populations and interventions which are not well supported with
empirical data as priorities for prevention efforts. CDC evaluates health

department success in prevention by measuring the extent to which “funding

197

tracks the epidemic“ (i.e., the proportionate distribution of prevention funding
across populations defined on the basis of HIV risk). This places health
departments in a position of submitting applications for federal funding to support
prevention services which do not mirror the CPG-developed prevention plan.
CPGs would then decline to concur with the health department’s funding
application and, as a result, the CDC would find the health department “out of
compliance“ with program requirements and could restrict funding.
Simultaneously, a situation of “non—concurrence“, where community expertise
has ostensibly been devalued by the health department, has the effect of
eroding trust between a health department and the communities that it is
statutorily charged with serving. Ultimately, this lack of trust can undermine the

quality and effectiveness of prevention services.

In Michigan’s case, this tension between discursive and subjugated forms
of knowledge as it applied to decision-making about allocation of resources,
played out in ways which probably did not have substantial impact on the quality
and effectiveness of HIV prevention services. Nevertheless, this tension did
affect decisions about allocation of resources, targeting, and intervention
selection in tangible ways. An example of this is, when the MDCH agreed to
restrict the scope of service on a particular contract serving MSM to exclude
African American MSM, due to the allegations made by some CPG members
that the contractor could not provide culturally competent services. In other
situations, this tension became an obstacle to effective and efficient decision-

making, as was the case in obtaining funding for prevention programming

198

targeted to HIV-infected persons. The SCPG ultimately arrived at the same
decision as the health department, but at the cost of strained relationships
between PLWHIAs and other CPG members, and an erosion of trust in the state

health department.

In summary, my dissertation research illustrates that examining policy
from a critical interpretive perspective, helps to illuminate the assumptions upon
which policies are predicated; how policy is interpreted and acted upon; how
policies work as instruments of government and organization; and the tangible
effects that policies have on the communities in which they are implemented.
Such transparency facilitates a greater understanding of what factors or features

make some policies successful while others fail.

Community planning was conceived as a tool to improve HIV/AIDS
prevention by combining scientific “evidence“ with the “expert“ knowledge of
communities impacted by HIV/AIDS. Community planning groups were to be the
means for accomplishing this marriage of fact and experience. The membership
of community planning groups, according to the CDC Guidance, was to be both
diverse and inclusive of representatives of “at-risk“ communities, CBOs, NGOs,
advocacy organizations, governmental agencies, and others. In its
implementation, emphasis was placed upon ensuring inclusion and participation

of “at-risk“ communities. This emphasis is problematic for two key reasons.

First and foremost, those individuals who are most “at risk“ for HIV, are

the least able to participate in this process. The political economy of AIDS

199

li'; . q
'94

underscores that this is a disease of inequality — political, economic, and social
inequality. Society’s most vulnerable and most disenfranchised have neither the
tools nor the time to attend meetings and conferences the purpose of which is to
write a document that tells government bureaucrats what they should do to help
them. In fact, these are not the people that participated in Michigan’s CPGs
process. Nearly all CPG members were affiliated with some kind of agency or
organization and had sufficient means and the ability to attend numerous
meetings and conferences. All had a reasonably good understanding of the
workings of government and of HIV/AIDS services. Those CPG members who
purportedly represented “at risk“ communities, clearly possessed important
perspectives and experience. They did not, and could not, I would argue,

represent those communities truly “at risk.“

I agree wholeheartedly that obtaining the input of those communities
impacted by the disease is essential - this is the spirit of community planning.
However, the mechanism for obtaining this input (i.e., participation in community
planning groups), does not achieve the intent of the policy. I would argue that
the intent would be better met through other means. A more effective means for
obtaining this input, would be to establish and maintain community—based
research and evaluation efforts that would use multiple methodologies to enable
public health and other providers to “keep their finger on the pulse“ of
communities with respect to prevention needs, and the factors which influence
those needs. CBOs, NGOs, public health agencies, social service agencies,

and others are all well positioned to obtain information regarding the prevention-

200

iii- seizes-‘1

 

related needs and preferences of the communities that they serve. Indeed, this
should be an essential part of ongoing service planning and quality assurance
activities. Such information can be obtained directly from clients (via interviews
or questionnaires), as well as through service data, chart reviews, and other
means. Sharing information between and among service providers, would also
contribute to provision of services which better meet client needs and

preferences.

Secondly, CPG members value experiential knowledge over “scientific“
knowledge. Community planning for HIV prevention requires that CPGs use a
variety of “evidence“ to develop a plan for HIV prevention. The plan describes
which populations should be targeted for HIV prevention, and which types of
HIV/AIDS prevention services should be provided to them. The effect of valuing
experiential knowledge over more empirically derived knowledge, is that science
is sometimes dismissed in favor of experience. Overvaluing experience has the
potential to negatively impact prevention efforts if it results in mis-targeting
prevention efforts, or in providing the wrong kinds of interventions. Fortunately,
' the MDCH was able to facilitate a balance in the kinds of information that CPG
members used and applied to priority setting. I am aware that other states were

not able to do so, such as one that spent hundreds of thousands of dollars

writing and publishing books of poetry designed to “empower“ the community for

which it was developed.

TheMDCH was able to encourage and facilitate a “balance“ in how the

CPGs used “scientific“ data and community experience. However, this balance

201

.° -_ ”Ty—'1
F in.

 

was not achieved without a great deal of tension between the MDCH and the
SCPG, such as when the MDCH presented the recommendation for funding
PLWHIA-targeted prevention activities. Health departments are the recipients of
federal funds for HIV prevention. The Guidance on community planning allows
health departments to “override“ the CPG-developed prevention plan, if it has a
compelling reason to do so, such as when epidemiologic trends suggest
targeting prevention efforts differently than what was suggested in the prevention
plan. Essentially, health departments can do what they want or need to do,
regardless of what the CPG says so long as they can justify it. This places
health departments in an impossible position. On the one hand, they have a
statutory responsibility to protect and promote the health of the public, while on
the other, as a condition of federal funding, they are required to comply with the
CPG developed prevention plan. If the health department rejects the plan (or
some part of it), they face the possibility of derailing the community planning
process entirely. More importantly, they run the risk of alienating stakeholders.
When a health department relies on these stakeholders to provide essential
prevention services, the potential for negative impact on prevention is greatly
increased. Rather than forcing CPGs to “weigh“ scientific and experiential
information in identifying priorities, prevention would be better served by having
the health department use experiential information to contextualize scientific
data. Experiential information would then be appropriately valued, and would be
applied in a productive manner. More importantly, the relationship between
health departments and stakeholders would be enhanced rather than

undermined.

202

 

Limitations

There are several limitations to this research. The research for this
dissertation was based upon community planning for HIV prevention as
implemented in Michigan. Community planning is a federal policy, and as such,
has been implemented in each US. state and territory, as well as in six large
cities which receive funding directly from the CDC for their HIV prevention
efforts. Community planning “looks“ slightly different from state to state, owing to
a number of diverse factors, including the structure for implementation (e.g.,
multiple or single CPGs); the political and economic environment within each
state preceding implementation of community planning; and health department
capacity to support community planning (e.g., resources, skills, expertise). For
this reason, findings from this research should be generalized across states with

caution.

Community planning was implemented in December of 1993, and
continues to be federal policy to this day. The research findings discussed in this
dissertation relate to community planning as it was implemented over a relatively
short period of time, and may not represent community planning as it exists and
operates today. Over time, the community planning process has evolved and
changed in Michigan and elsewhere. The regional configuration that was in
place at the time data were collected, have been consolidated into a single,
statewide process. Additionally, the community planning process has merged
with a parallel planning process for care and treatment. The state health

department has once again reorganized and the leadership of the HIV/AIDS

203

program has changed. These changes have certainly influenced the dynamics
of community planning, as well as how the process is managed. The policy
environment at both the state and federal levels has changed since the time I
concluded field work. Federal priorities have shifted, and this has impacted
community planning in important ways, both because of changes made to the
community planning policy, and because of other policy priorities which have
diverted attention away from community planning or have made it difficult to

implement the priorities identified by CPGs.

Recommendations for Future Research

Medical anthropology should both support and encourage policy research.

With respect to HIV/AIDS, there are clearly a number of areas where such policy
research is both warranted and would be beneficial. Included among these are
policies associated with: allocation of federal resources for care and treatment;
funding for HIV/AIDS services for racial/ethnic minorities; and abstinence-only
efforts. US. policy regarding funding for international HIV/AIDS efforts also
represents an important and interesting area for research, particularly where that
policy conflicts with local cultural norms and priorities, and the policies of other

donor countries.

Additional and ongoing ethnographic research designed to inform
HIV/AIDS prevention efforts is still urgently needed. Prevention efforts continue
to be focused according to HIV risk. Ethnographic research will contribute to a
fuller understanding of social groupings and their networks. Focusing on these

networks, rather than on “risk groups“, would certainly improve the effectiveness

204

 

of HIV prevention efforts. Placing such ethnography in a political-economic
context would further enhance the effectiveness of prevention efforts, by

highlighting those structural factors which influence and shape social networks.

HIV prevention research continues to be predominantly individualistic in its
focus. HIV prevention efforts would be tremendously enhanced if research
efforts were focused on identifying social and structural factors which mediate
risk, and in developing strategics to address such factors. Policy rcsearch in
particular, should seek to identify and describe the combinations of interventions
which are best suited to addressing structural factors, and developing strategies
for introducing these program elements into existing social contexts in a way that

will ensure their success.

205

APPENDIX A

Interview Guide

Background:

(A)

(B)

(C)

(D)

(E)

Ke
1.

Would you object to my identifying you in this dissertation or in associated
presentations and/or publications? I will, of course, provide you with an
opportunity to review any materials and provide comment upon them.

It will be very helpful if I can tape our conversation. Do you have any
objections to this?

A bit about your background, relative to your involvement in engineering
the community planning process. How did you come to become involved
with what is now known as community-based planning for HIV prevention?
Generally, what were your expectations for community planning?

Are these expectations being realized?

uestion :

In general AIDS discourse, we refer to the “AIDS community“. From your
perspective, who is part of the “AIDS community"?

Specifically in relation to community planning and the Guidance on
community planning, who is included among "community”?

In relationship to community planning, do you think that the CDC, health
departments, and non-govemmental participants in community planing
share the same understanding of Mmunity? If not, how do their
understandings differ?

The term "stakeholder“ is also used in community planning. How is this
term the same as, or different from ”community”.

The community planning Guidance requires that CPG membership be
representative of the current and projected epidemic. In your experience,
how is representation being operationallzed?

a. What criteria/characteristics are being emphasized in
“representation“?

b. What impact has this had, if any, in facilitating/sustaining the
process?

206

The community planning Guidance also requires “authentic
representation” from affected communities. What is intended by this
term? Who decides this?

From your perspective, what impact has the emphasis on CPGs having
representative membership had on managing, facilitating and sustaining
the planning process? (i.e. barrier or facilitator to planning? planning
tasks? decision-making?)

In community planning, “community“ has, in large part, been defined on
the basis of epidemiology -— meaning that our categorization or grouping
of individuals into "communities“ is an artifact of epidemiologic theory and
practice. What impact, if any, do you think this has had on how community
is understood and articulated in community planning?

Do you think that community planning has promoted a sense of
community? Please explain. -

207

APPENDIX 8

Organizational Chart
Division of HNIAIDS Prevention
Centers for Disease Control and Prevention

83 858:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

seas asses sow ,
9:52... magma . EEEE £0 25
_ 655
5:95 mousse toaezw E05852 2866 535
8eo___oz=m assoc Seuss: _ .2355 Beach a 9.2a:
0302 .28
$85. 9...: .850 aosoceeoz eased 55 com
30.28 Snack. .6 3E0
nocem a 555
......tc . - _ ............
. . , cases: .8258
353 885
8.5955 >__._ ficozquE.
$5.2m 229m
389 c 83
.2 a a. < 85 $13:
850$ 3:2. 265
555 5.88m , 555 53301
802mm 8:555 853 so. 3825 85082 conwagw Eflaoi
=8 85..
Eooom 2:22 8: a. o >0 E
2850 a: 85.8 .2 382.0 o§83< .meosocomomflcoowm M3083 .80 ow
n h 555
82965 new
cocoam 358‘. 585.. com 32$ boo 2.5.2.“. 605332
38.6535 3825 >580 8825 338 @5858
93520 52 x80 on :38. 929.0: 2,3 =00 one:
.9025 3825
555 academy.
cocoa >8_o_Eoo_am w 85.325 535 w 228.com 8:522... 52528:.
9.2283 920 . $5 53328

 

 

 

 

 

 

 

 

 

Ere c2229.“. 822... .5 cacao

 

 

208

APPENDIX C

ions

Mi igan’s HIV/AIDS Prevention Planni

 

 

 

 

 

 

 

 

 

 

 

 

 

BIBLIOGRAPHY

Allen, Tim and Suzette Heald
2004 HIV/AIDS Policy in Africa: What Has Worked in Uganda and
What has Failed in Botswana? Journal of lntemahonal
Development 16:1141-1154.

Ajzen land Fishbein M.
1980 Understanding Attitudes and Predicting Behavior. Englewood
Cliffs: Prentice Hall.

Auerbach, Judith, Christina Wypijewska and H. Keith Brodie, eds.
1994 AIDS and Behavior: An Integrated Approach. Washington DC:
National Academy Press.

Altman, Dennis
1994 Power and Community. London: Taylor and Francis.

Altman, Dennis
1988 Legitimation through Disaster: AIDS and the Gay Movement. ln
AI 8: The Burdens of History. Elizabeth Fee and Daniel M. Fox,
eds. Pp. 301-315. Berkeley: University of California Press.

Association of State and Tenitorial Health Officers, National Alliance of State
and Territorial AIDS Directors, Council of State and Tenitorial Epidemiologists.
1993 ggte Health Agency Vision for HIV Prevention. Washington,

Bandura, Albert ‘
1977 Social Learning Theory. Englewood Cliffs: Prentice—Hall.

Baer, Hans
1997 The Misconstruction of Critical Medical Anthropology: A
Response to a Cultural Constructivist Critique. Social Science
and Medicine 44( 1 0):1565—1573.

Baer, Hans, Merrill Singer and Ida Susser
2003 gage? Anfliropology and the World System. Westport: Praeger
u is ers.

Bateson, Gregory
1958 Naven. Stanford: Stanford University Press.

Bayer, Ronald
1988 Private Acts, Social Consequences: AIDS and the Politics of
Public Health. New Brunswrck: Rutgers University Press.

Becker, Marshall and Jill Joseph
1988 AIDS and Behavioral Change to Reduce Risk: A Review.
American Journal of Public Health 78:394-410.

Bolton, Ralph
1995 Rethinking Anthropology: The Study of AIDS. In Culture and

210

 

Sexual Risk: Anthropological Perspectives on AIDS. Han ten
Brummelhuis and Gilbert Herdt, eds. Luxembourg: Gordon and
Breach Publishers.

Brandt, Allan M.
1988 AIDS: From Social History to Social Policy. In AIDS: The
Burdens of History. Elizabeth Fee and Daniel M. Fox, eds. Pp.
147-171. Berkeley: University of California Press.

Caceres, Carlos F.
2000 The Production of Knowledge on Sexuality in the AIDS Era:
Some Issues, Opportunities, and Challenges. In Framing the
Sexual Subject: The Politics of Gender, Sexuality and Power.
Richard A. Parker, Regina Maria Barbosa, and Peter Aggleton,
eds. Pp. 241-259. Berkeley: University of California Press.

Celentano, D.D., et al.
1991 Risk Factors for Shooting Gallery Use and Cessation Among
gqfiazgqorgglgmg Users. American Journal of Public Health

Callen, Michael
1983 The Denver Principles. The AIDS Forum. Denver, Colorado.

Centers for Disease Control
1990 Current Trend Estimates of HN Prevalence and Projected AIDS
Cases: Summary of a Workshoo, October 31 - November 1,
1989. Morbidity and Mortality Weekly Report 39(23
Febniary):110-112, 117-119.

1982a Persistent, Generalized Lymphadenopathy Among Homosexual
Males - United States. Morbidity and Mortality Weekly Report
31(12 May):277-279.

1982b Opportunitic Infections and Kaposi’s Sarcoma Among Haitians in
they? naitseg-ssstates. Morbidity and Mortality Weekly Report 31 (9
u : .

1982c Pneumocystis carinii Pneumonia Amon Persons with
Hemophilia A. Morbidity and Mortality eekly Report. 31 (16
July): 365-367.

1981a Pneumocystis Pneumonia - Los Angeles. Morbidity and Mortality
Weekly Report.30 (5 June):250-252.

1981b Kaposi’s Sarcoma and Pneumocystis Pneumonia Amofi
‘ Homosexual Men - New York City and California. Morb' ity and
Mortality Weekly Report. 30 (4 July):250-252.
Centers for Disease Control and Prevention
2003 HNIAIDS Surveillance Report (Volume 15). Available at:
'Ilwww.cd . ovlhiv/ erin .h

2001 HIV Prevention Strategic Plan Through 2005. Atlanta. GA.

211

If: “'2'!“

2000 HIV/AIDS Surveillance Report 12(2).
1997a HIV/AIDS Surveillance Report 9(1):3-37.

1997b Update: Trends in AIDS Incidence - United States, 1996.
Morbidity and Mortality Weekly Report 46(37): 861 -867.

1995 U ate: Acquired Immunodeficien Syndrome - United States,
1 94. Morbidity and Mortality Wee Report 44 (3
February):64—67.

1993 Supplemental Guidance on HIV Prevention Community Planning
for Noncompeti Continuation of Cooperative Agreements for
HIV Prevention rojects. Atlanta, GA.

1992 1993 Revised Classification S tern for HIV Infection and
Expanded Surveillance Case finition for AIDS Amon
Adolescents and Adults. Morbidity and Mortality Wee Report:
Recommendations and Reports 41 (no. RR—17):1-19.

Centers for Disease Control and Prevention, Advisory Committee on the
Prevention of HIV Infection
1994 EGXemal Review of CDC’s HIV Prevention Strategies. Atlanta,

Clatts, Michael
1995 . Disembodied Acts: On the Perverse Use of Sexual Categories in
the Study of High-Risk BehaviOr. ln Culture and Sexual Risk:
Anthropological Perspectives on AIDS. Hans ten Brummelhuis
and Gilbert Herdt, eds. Pp. 241-255. Luxembourg: Gordon and
Breach Publishers. .

Clatts, Michael, .W.R. Davis, Sheny Deren, et al.

1994 AIDS Risk Behavior among Drug Injectors in New York City:
Critical Gaps in Prevention Policy. In Global AIDS Policy.
gouglas A. Feldman, ed. Pp. 215-235. Westport: Bergin and

arvey.

Cohen, Anthony P. *
1985 The Symbolic Construction of Community. London: Routledge.

Daniel, Herbert and Richard Parker
1993 Sexuality, Politics and AIDS In Brazil. London: Falmer Press.

D’Emilio, John
1983 Sexual Politics, Sexual Communities: The Making of a
Homosexual Minority in the United States, 1940-1970. Chicago:
University of Chicago Press.

Des Jarlais, DC. and Friedman SR.
1990 Shooting Galleries and AIDS Infection Probabilities and Tough
Policies. American Journal of Public Health 80: 142-144.

Dilger, Hansjorg
2003 Sexuality, AIDS, and the Lures of Modernity: Reflexivity and

212

Morality amon Young People in Rural Tanzania. Medical
Anthropology 2:23-52.

Durkheim, Emile
1933 The Division of Labor in Society. New York, The Free Press.
Farmer, Paul
1999 Infections and Inequalities: The Modern Plagues. Berkeley:
University of California Press.
1995 Culture, Poverty and the Dynamics of HIV Transmission in Rural
Haiti. In Culture and Sexual Risk: Anthropological Perspectives
on AIDS. Han ten Brummelhuis and Gilbert Herdt, eds. Pp.3-28.
Luxembourg: Gordon and Breach Publishers.
1992 AIDS and Accusation: Haiti and the Geography of Blame. t3
Berkeley: University of California Press. [5
.1
Fee, Elizabeth 9
1988 Sin versus Science: Veneral Disease in Twentieth-Century

Baltimore. In AIDS: The Burdens of History Elizabeth Fee and
Daniel M. Fox, eds. Pp. 121-146. Berkeley: University of
California Press.

Fee, Elizabeth and Daniel M. Fox

1 992

1 988

The Contemporary Historigraphy of AIDS. In AIDS: The Maldng
of a Chronic Disease. Elizabeth Fee and Daniel M. Fox, eds.
Berkeley, University of California Press.

SIDS: The Burdens of History. Berkeley: University of California
ress.

Foucault, Michel

1 983

1 980

1 979

1 978

1973

Fox, Daniel M.
1988

The Subject and Power. In Michel Foucault: Beyond
Structuralism and Hermeneutics, 2"“ edition. Herbert Dre 3
and Paul Rabinow, eds. Chicago: University of Chicago ress.

Power/Knowledge: Selected Interviews and Other Writings.
Colon Gordon, ed. New York: Pantheon Books.

Discipline and Punish: The Birth of the Prison. New York:
Pantheon Books.

The History of Sexuality. Vol. 1: An Introduction. Robert Hurley,
trans. New York: Vintage Books.

Madness and Civilization: A History of Insanity in the Age of
Reason. New York: Vintage Books.

AIDS and the American Health Polity: The History and PrOSpects
of a Crisis of Authority. In AIDS: The Burdens of History.
Elizabeth Fee and Daniel M. Fox, eds. Pp. 316-343. Berkeley:
University of California Press.

213 ‘

Feldman, Douglas A., ed.
1994 Global AIDS Policy. Westport, CT: Bergin and Garvey.

Geertz, Clifford
1973 The Interpretation of Cultures. New York, Basic Books.

Gilman, Sander
1988 Disease and Representation: Images of Illness from Madness to
AIDS. Ithaca: Cornell University Press.

GIick-Shiller, Nina
1992 What's Wro with This Picture? The H monic Construction
of Culture in IDS Research in the Unit States. Medical
Anthropology Quarterly 62237-254.

Goffman, Erving
1967 Interaction Ritual. New York: Doubleday and Company.

1963 Stigma: Notes on the Management of Spoiled Identity. New
York, Simon and Schuster.

Good, Byron
1994 Medicine, Rationality, and Experience: An Anthropological
Perspective. Cambridge: Cambridge University Press.

Greenberg, David F.
1988 The Construction of Homosexuality. Chicago: University of
Chicago Press.

Gupta, Akhil and James Ferguson, eds.
1997 Culture, Power, Place: Explorations in Critical Anthropology.
Durham: Duke University Press.

Heald, Suzette
2005 Abstain or Die: The Development of HNIAIDS Policy in
Botswana. Joumalof Biosocial Science 38:29-41.

Herdt, Gilbert
1992 Introduction. In The Time of AIDS: Social Analysis, Theory and
Method. Gilbert Herdt and Shirley Lindenbaum, eds. Pp. 3-26.
Newberry Park, CA: Sage Publications, Inc.

1981 Guardians of file Flutes: Idioms of Masculinity. New York:
McGraw—Hill.

Herdt, Gilbert and Andrew Boxer
1995 Bisexuality: Toward a Comparative Theory of Identities and
Culture. In Conceiving Sexuality. Approaches to Sex Research
in a Postmodern World. Richard G. Parker and John H. Gagnon,
eds. Pp. 69-83. New York: Routledge.

Henriksson, Benny and Sven Axel Mansson
1995 Sexual Negotiations: An Ethnographic Study of Men Who Have
Sex with Men. In Culture and Sexual Risk: Anthropological
Perspectives on AIDS. Edited by Han ten Brummelhuis and

214

m‘ -

ip--

 

Gilbert Herdt. Luxembourg: Gordon and Breach Publishers.

Herek, Gregory M. and Beverly Greene, eds.
1995 AIDS, Identity and Community: The HIV Epidemic and Lesbians
and Gay Men. Thousand Oaks, CA: Sage Publications.

Holtgrave, David
2001 “The Dream of HIV Prevention Community Planning“ presented
at 2001 Community Planning Leadership Summit. March 15—18,
2001. Houston, TX.

Institute of Medicine, Committee for the Study of the Future of Public Health,
Division of Health Care Services
1988 The Future of Public Health. Washington DC, National
Academy Press.

Institute of Medicine, Committee on Prevention and Control of Sexually
Transmitted Diseases, Division of Health Promotion and Disease Prevention
1997 The Hidden Epidemic: Confionting Sexually Transmitted
Diseases. Washington DC, Nafional Academy Press.

Jenkins, Richard
1997 Rethinking Ethnicity: Arguments and Explorations. London: Sage
Publications.

Johnson, Judith A.
1992 Federal Fundin for AIDS Research and Prevention.
gagressional esearoh Service Report for Congress. 92-328

Joint United Nations Programme on HIV/AIDS.
. 2004 AIDS Epidemic Update: December 2004. Available at:
h :Ilwww.un ids or 20 I it fh I

Jose, Benny, Samuel R. Friedman, Alan Neaigus, et al.
1996 Collective Organisation of Injecting: Drug Users and The
Struggle Against AIDS. In AIDS, Drugs and Prevention:
Perspectives on Individual and Community Action. In Tim
Rhodes and Richard Hartnoll, eds. Pp. 216-233. London:
Routledge Press.

Joseph, Stephen C.
1992 Dragon Within the Gates: The Once and Future AIDS Epidemic.
New York, Carroll and Graf.

Kaiser Family Foundation
2000 Federal HI V/AIDS Spending: A Budget Chartbook, Fiscal Year
2000. Menlo Park, CA.

Kammerer, Cornelia Ann, Otome Klein HutheeSing, Ralana Maneeprasert, et al.
1995 Vulnerability to HIV Infection Among Three Hill Tribes in
Northern Thailand. In Culture and Sexual Risk: Anthropological
Perspectives on AIDS. Han ten Brummelhuis and Gilbert Herdt,
eds. Luxembourg: Gordon and Breach Publishers.

215

Kahn, Arthur D.
1993 AIDS: The Mnter War. Philadelphia, Pk Temple University

Press.

Kan, Sergei
1989 Symbolic Immortality: The Tlingit Potlatch of the Nineteenth
Century. Washington DC, Smithsonian Institution Press.

Kane, Stephanie and Theresa Mason
1992 IV Drug Users and Sex Partners: The Limits of Epidemic ical
Categories and The Ethnography of Risk. In The Time of IDS:
Social Analysis, Theory and Method. Gilbert Herdt and Shirley
Lindenbaum, eds. Pp. 199-222. Newberry Park, CA: Sage
Publications, Inc.

Karon J.M., P.S. Rosenberg, G. McQuillan, et al.
1996 Prevalence of HIV Infection in the United States, 1984 to 1992.
Journal of the American Medical Association 276(2):126-131.

Koester, Stephen
1996 The Process of Drug Injection: App 'ng Ethnographytto the
Study of HIV Risk Among lDUs. In rm Rhodes and ichard
Hartnoll, eds. AIDS, Drugs and Prevention: Perspectives on
Individual and Community Action. London: Routledge Press.

1994 Copping Running and Paraphernalia Laws: Contextual Variables
and Needle Risk Behavior Among Ingecting Drug Users in
Denver. Human Organization 53(3): 87-2 5.

1994 Applying Ethnography to AIDS Prevention among IV Drug Users
and Social Policy Implications. In AIDS Prevention and
Services: Community Based Research. Johannes Van Vugt, ed.
Westport, CT: Bergin and Garvey.

Koop, C. Everett
1991 Koop,: The Memoirs of America’s Family Doctor. Random House,

New York.

Leonard, Terri
1990 Male Clients of Female Street Prostitutes: Unseen Partners in
fixgal gsease Transmission. Medical Anthropology Quarterly

Lichtenstein, Bronwen
2000 Secret Encounters: Black Men, Bisexuality, and AIDS in
Alabama. Medical Anthropology Quarterly 14(3):374-393.

Lindenbaum, Shiliey
1998 Images of Catastrophe. In The Political Economy of AIDS. Merrill
ginaelhed. Pp. 33-58. Amityville, New York: Baywood
u is lng.

Lock, Margaret and Nancy Scheper-Hughes
1996 A Critical-Interpretive Approach in Medical Anthropo : Rituals

and Routines of Discipline and Dissent. In Medical An ropology:

216

Contemporary Theory and Method. Carolyn F. Sargent and
ghgma‘s M. Johnson, eds. Pp.41-70. Westport, CT: Praeger
u Iis ers.

Lockhart, Chris
2002 Kunyenga, “Real Sex,“ and Survival: Assessing the Risk of HIV
Infection among Urban Street Boys in Tanzania. Medical
Anthropology Quarterly 16(3):294—31 1.

Marcus, George and Michael Fischer
1986 Anthropology as Cultural Critique: An Experimental Moment in
the Human Sciences. Chicago: University of Chicago Press.

Melody, ME.
1994 Acting Up Academically AIDS and the Politics of
Disempowennent. In Global AIDS Policy. Douglas A Feldman,
ed. Westport, CT: Bergin and Garvey.

Michigan Department of Commun' Health
2005 flattery HIV/AID Analysis. January 1, 2005. Lansing,
lgan.

2004a Status of the HIV/AIDS Epidemic in Michigan, 2004. Lansing,
Michigan.

2004b $0.3; Epidemiologic Profiles of HI V/AIDS in Michigan. Lansing,
lgan. ,

Michigan Statewide Community Planning Group for HIV Prevention
1997 Statewide Comprehensive Plan for HIV Prevention: Michigan.
September. Lansing, Michigan.

1996 Operating Policies and Procedures. Lansing, Michigan.

Murray, Stephen 0.
1996 ~ American Gay. Chicago: University of Chicago Press.

1995a Latin American Male Homosexualities. Albuquerque: University
of New Mexico Press.

1995b Homosexual Categorization in Cross-Cultural Perspective. In
Latin American Male Homosexualities. Stephen 0. Murray, ed.
Pp. 3-32. Albuquerque: University of New Mexico Press.

1995c Machismo, Male Homosexuality and Latino Culture. In Latin
American Male Homosexualities. Stephen 0. Murray, ed.
Albuquerque: University of New Mexico Press.

Nelkin, Dorothy, David P. Willis and Scott V. Panis, eds.
1991 A Disease of Society: Cultural and Institutional Responses to
AIDS. New York: Cambridge University Press.

Nisbet, Robert A.
1993 The Sociological Tradition. New Brunswick, NJ: Transaction
Publishers.

217

 

Obbo, Christine
1995 Gender, A and Class: Discourses on HIV Transmission and
Control in ganda. In Culture and Sexual Risk. Anthropological
Perspectives on AIDS. Han ten Brummelhuis and Gilbert Herdt,
eds. Pp. 79-95. Luxembourg: Gordon and Breach Publishers.

Oppenheimer, Gerald M.
1988 In the Eye of the Storm: The Epidemiological Construction of
AIDS. In AIDS. The Burdens of History Elizabeth Fee and Daniel
M. Fox, eds Pp. 267-300. Berkeley: University of California
Press.
Paiva, Vera
1995 Sexuality, AIDS and Gender Norms among Brazilian Teenagers.
In Culture and Sexual Risk: Anthropological Perspectives on
AIDS. Han ten Brummelhuis and Gilbert Herdt, eds. Pp. 97-114.
Luxembourg: Gordon and Breach Publishers.

Parker, Richard
1995a Changing Brazilian Constructions of Homosexuality. In Latin
American Male Homosexualities. Stephen 0. Murray, ed. Pp.
241-255. Albuquerque: University of New Mexico Press.

1995b The Social and Cultural Construction of Sexual Risk, or How to
Have (Sex) Rcsearch in an Epidemic. ln Culture and Sexual
Risk. Anthropological Perspectives on AIDS. Han ten
Brummelhuis and Gi bert Herdt, eds. Pp. 257-269. Luxembourg:
Gordon and Breach ublishers.

1994 Public Policy, Political Activism and AIDS In Brazil. In Global
AIDS Policy. Douglas A. Feldman, ed. Pp. 28-46. Westport,
Connecticut: Bergin and Garvey.

1991 Bodies, Pleasures, and Passions. Sexual Culture in
Contemporary Brazil. Boston: Beacon Press.

Parker, Richard and Peter. Aggleton
2003 HIV and AIDS-related Stigma and Discrimination: A Conceptual
Framework and Implications for Action. Social Science and
Medicine 57:13-24.

Parker, Richard, Regina Maria Barbosa, Peter leton, eds.
2002 Framing the Sexual Subject. In raining the Sexual Subject: The
Politics of Gender, Sexuality and Power. Pp. 1-25. Berkeley:
University of California Press.

Peterson, John L.
1995 AIDS-Related Risks and Same-Sex Behaviors Among African
American Men. In AIDS, Identity and Community: The HIV
Epidemic and Lesbians and Gay Men. Gregory M. and Beverly
Greene, eds. Pp. 85-104. Thousand Oaks, CA: Sage
Publications.

Patton, Cindy
1990 Inventing AIDS. New York: Routledge.

218

Presidential Commission on the Human Immunodeficiency Virus Epidemic
1988 Report of the Presidential Commission on the Human
Immunodeficiency Virus Epidemic. June 24th.

Quam, Michael D.
1994 AIDS Policy and the United States Political Economy. In Global
AIDS Policy. Douglas A. Feldman, ed. Pp. 142-159. Westport,
CT: Bergin and Garvey.

Rabinow, Paul, ed.
1984 The Foucault Reader. New York: Pantheon Books.

Rhodes, Lorna A.
1991 Emptying Beds: The Work of an Emergency Psychiatric Unit.
Berkeley: University of California Press.

Rhodes, Tim and Merrill Si er, Philippe Bourgois, et al.
2005 The Social tructural Production of HIV Risk Among Injecting
Drug Users. Social Science and Medicine 61:1026-1044.

Romero-Daze, Nancy and David Himmelgreen
1998 More than Money for Your Labor. Migration and the Political
Economy of AIDS in Lesotho. In The Political Economgaof AIDS.
yearlilthinger, ed. Pp. 185-204. Amityville, New York: ywood
u is lng.

Rosenberg, Charles E.
1988 Disease and Social Order in America: Perceptions and
Expectations. AIDS: The Burdens of History. Elizabeth Fee and
Daniel Fox, eds. Berkeley: University of Calrfomia Press.

Rushing, Vlfilliam A.
995 The AIDS Epidemic: Social Dimensions of an Infectious
Disease. Boulder, CO: Westview Press.

Rwabukwali, Charles B., Debra A. Schulman, Janet W. McGrath, et al.
1994 Culture, Sexual Behavior, and Attitudes toward Condom Use
among Baganda Women. In Global AIDS Policy. Douglas A.
Feldman, ed. Westport, Connecticut: Bergin and Garvey.

Schoepf, Brooke Grundfest
1995 Culture, Sex Research and AIDS Prevention in Africa. In
Culture and Sexual Risk: Anthropological Perspectives on AIDS.
Han ten Brummelhuis and Gilbert Herdt, eds. Luxembourg:
Gordon and Breach Publishers.

Shilts, Randy
1988 And The Band Played On: Politics, People and the AIDS
Epidemic. Penguin Books, New York, NY.

Shaw, Susan J. ‘
2006 Public Citizens, Marginalized Communities: The S gle for
Syringe Exchahge in Springfield Massachusetts. M icaI
Anthropology 25:31 -63.

219

Shore, Chris and Susan Wright
1997 Policy: A New Field of Anthropology. In Anthropology: Critical
Perspectives on Govemance and Power. Cris Shore and Susan
Wright, eds. Pp. 3-39. London, Routledge Press.

Singer, Merrill
1998 Forgin a Political Economy of AIDS. In The Political Economy
of AID . Merrill Singer, ed. Pp. 3-31. Amityville, New York:

Baywood Publishing.

1995 Beyond the Ivory Tower. Critical Praxis in Medical Anthropology.
Medical Anthropology Quarterly 9(1):80-106.

1994 AIDS and the Health Crisis of the US Urban Poor, The
Perspective of Critical Medical Anthropology. Social Science and
Medicine 39(7): 931-948.

Smith, Daniel Jordan
2003 Imagining HNIAIDS: Morality and Perceptions of Personal Risk
in Nigeria. Medical Anthropology 22:343-372.

Sobo, E.J.
1998 Love, Jealouséy, and Unsafe Sex amon Inner-City Women. In
The Political conom of AIDS. Merrill inger, ed. Amityville,
New York: Baywood ublishing.

Sontag, Susan -
1988 AIDS and Its Metaphors. New York, Farrar, Straus and Giroux.

Symonds, Patricia V.

1998 Political Economy and Cultural Logics of HIV/AIDS amon the
Hmong in Northern Thailand. In The Political Economy 0 AIDS.
allegillfinger, ed. Pp. 205-226. Amityville, New York: Baywood

u is ing.

Tan, Michael
1995 From Bakla to Gay: Shifting Gender Identities and Sexual
Behaviors in the Phillippines. Conceivin Sexuality: Approaches
to Sex Research in a Postmodern Wort . Richard G. Parker and
John H. Gagnon, eds. Pp. 85-96. New York: Routledge.

ten Brummelhuis, Han and Gilbert Herdt
1995 Culture and Sexual Risk: Anthropological Perspectives on AIDS.
Amsterdam: Gordon and Breach Publishers.

Terto, Veriano
2000 Male Homosexual and Seropositivity: The Construction of
Social Identities in razil. In Framing the Sexual Subject: The
Politics of Gender; Sexuality and Power. Richard Parker, Regina
Maria Barbosa and Peter Aggleton, eds. Pp. 60-78. Berkeley:
University of California Press.

Turner C.F., H.G. Miller and LE. Moses, eds.
1989 AIDS: Sexual Behavior and Intravenous Drug Use. Washington,
DC: National Academy Press.

220

Turner, Victor
1967 The Forest of Symbols: Aspects of Ndembu Ritual. Ithaca:

Cornell University Press.

United States Congress. House of Representatives
1993 Comprehensive HIV Prevention Act of 1993. 1993, 103'“
Congress. HR. 1538.

1983 Departments of Labor, Health and Human Services, and
Education, and Related Agencies Appropriations Act, 1988.
Public Law 98-63. 98‘“ Congress. HR. 3069.

1982 A joint resolution making furflier continuing appropriations and
providing for productive employment for the fiscalcyear 1983,
lrand ftéggther purposes. Public Law 97-377. 97'“ ongress, H.J.
es. .

United States Congress. Senate.
1988 Departments of Labor, Health and Human Services, and
Education, and Related Agencies Appropriations Act, 1988.
Public Law 100-607. 100'" Congrcss. S 2889.

1984 Preventive Health Amendments of 1984. Public Law 98-555. 98'”
Congress. 8.2301.

van deeriet, Vl inia
1996 e Politics of AIDS. London: Bowerdean Publishing.

Watney, Simon
1994 Practices of Freedom: Selected Writings on HI V/AIDS. Durham:
Duke University Press.

Wlebel, Wayne
1996 Ethnographic Contributions to AIDS Intervention Strategies. In
AIDS, Drugs and Prevention: Perspectives on Individual and
Community Action. Tim Rhodes and Richard Hartell, eds. Pp.
186- 200. London: Routledge Press.
Wolf, Eric

1990 Distinguished Lecture: Facing Power - Old Insights, New
Questions. American Anthropologist 92(3):586-596.

World Health Organization.
1986 Ottawa Charter for Health Promotion. First lntemational
Conference on Health Promotion, Ottawa, Canada, 17-21
November 1986.

World Health Organization, Joint United Nations Global Programme on AIDS
2000 AIDS Epidemic Update: December 2000. Geneva.

1997 Report on the Global HI V/AIDS Epidemic. Geneva.

221

IIIIIIIIIIIIIIIIIIIIIIIIIIII

iHilarity!illiiiiliiiiii