Sm. Sci. Med. Vol. 38, No. IO,PP.

1337-1346,1994
Copyright 0 1994ElsevierScienceLtd
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RISKY BUSINESS: THE CULTURAL CONSTRUCTION OF

AIDS RISK GROUPS
NINA GLICK SCHILLER,STEPHENCRYSTALand DENVERLEWELLEN
Department of Anthropology, University of New Hampshire, Durham, NH 03824, U.S.A.

Abstract-AIDS researchers and policy makers have often employed the concept of ‘culture’
to characterize ‘high risk groups’ and explain why members of these groups continue to practice
‘risky behavior.’ We argue that the widespread interest in ethnography tends to reflect a usage of the
concept of culture that distances and subordinates. People with AIDS are portrayed as either minority
street people abandoned by friends and family or as white gay men who live within a gay community,
and in either case as socially deviant. This construction of HIV disease has facilitated distancing and denial
of personal risk by persons outside the ‘high risk groups,’ impeding prevention efforts. Perceptions of
subcultures of risk groups are contrasted with data on a random sample of persons with AIDS in
New Jersey.

Key words-AIDS, risk group, cutture, intravenous drug users

In the 1990s there have been indications that SOCIAL CONSTRUCfION OF DISEASE, CULTURE,
new sectors of the population were increasingly at AND HIV
risk for HIV infection [l-3]. For example, the rate of
From the beginning of the AIDS epidemic, epi-
increase has been particularly rapid among women;
demiology played a major role in defining the disease
by 1991, HIV disease is estimated to become the 5th
and the types of people who experience it [6]. Epi-
leading cause of death of women of reproductive age
demioiogists found themselves studying social behav-
[4]. These trends have been developing for some time,
ior embedded in values and beliefs-characteristics
but public awareness that broad sections of the
which, to the degree they are shared among and
population were at risk for HIV infection developed
distinctive to a group of people, can be defined as
only slowly. This paper suggests that the concept of
‘culture.’ The study of culture thus became part of the
‘risk group’ that was popularized in the first decade
study of AIDS. In this research, culture tended to be
of the AIDS epidemic has contributed to the slow
used as a ‘natural’ descriptor such as ‘age’ and ‘sex’
pace at which both health officials and the public
by which populations could be divided into bounded
have come to perceive that the risk of HIV is not
subgroups and described according to their detimit-
confined to marginalized sectors of the U.S. popu-
ing characteristics.
lation.
As the epidemic progressed, interest of AIDS re-
In the construction of AIDS risk groups, ‘culture’
searchers and funding agencies in ‘cultural’ expla-
has been used as a distinguishing criterion defining
nations became fairly widespread. Advertisements for
membership in ‘high risk groups’ and as an expla-
ethnographers appeared in major U.S. newspapers
nation of why members of these groups continue
and anthropologists found both legitimacy and em-
to practice ‘risky behavior.’ We will argue that
ployment in the field of AIDS research. At a number
the widespread interest in culture as an explanatory
of research sites throughout the United States, the
variable in describing the evolution of the epidemic,
National Institute on Drug Abuse hired ethnogra-
and the concomitant interest in ethnography,
phers as part of its AIDS prevention project staffs.
has tended to reflect a usage of culture that
‘Ethnographic data’ were frequently cited in journal
distances and subordinates. The identification of
articles on AIDS epidemiology 171. The first para-
risk groups said to possess distinctive cultural
graph of a report issued by the National Research
traits portrays AIDS as a disease residing in distant
Council (NRC) stated:
and separate populations [5]. This cultural approach
to HIV disease has impeded efforts to prevent the The spread of HIV infection and, consequently, AIDS is the
product of human behaviors enacted in social contexts.
spread of the virus and to educate the public about
Both the behaviors and the circumstances in which they
the potential impact of the epidemic on the entire occur are conditioned and shaped by culture and the larger
society. social structure [8].

1337
1338 NINA GLICK SCHILLER et al.
The index of this NRC report contained seven differ-
ent topics under ‘ethnographic studies.’
Much of the discussion of the cultural beliefs and
practices that affect the transmission of the HIV virus
has been framed as a discussion of the behavior of
‘risk groups’ or ‘high risk populations.’ The popular-
ization of the concept of AIDS risk groups grew out
of initial efforts on the part of the United States
Centers for Disease Control (CDC) to specify ‘sub-
groups’ ‘at risk for AIDS.’ It is therefore useful to
examine the groupings identified by the CDC. The
CDC employed a two-stage procedure to categorize
those at risk for AIDS. First the CDC found that:
. . a wide variety of persons are at risk for AIDS including:
homosexual or bisexual men, intravenous drug users, trans-
fusion or tissue transplant recipients, heterosexual partners
of infected persons (including persons born in ‘Pattern-II
countries-Caribbean and central African countries where
heterosexual transmission predominates), children born to
infected mothers and persons with mucous membrane and
percutaneous exposure to blood and body fluids of infected
persons (e.g. health-care workers). Because homosex-
ual/bisexual males comprise such a large proportion of the
total number of AIDS cases, trends in this subgroup will
overshadow those in other groups unless the data are
examined separately [9].
In classifying cases of AIDS reported to registries,
those reporting more than one source of transmission
were ranked
into a hierarchy of exposure categories. Persons with more
than one reported mode of exposure to HIV are counted in
the exposure category listed first in the hierarchy, except for
persons with a history of both homosexual/bisexual contact
and intravenous drug use. They are counted as a separate
category [5].
The hierarchy of transmission categories con-
structed by the CDC included the following group-
ings: (1) ‘Male homosexual/bisexual contact’ (2)
‘Intravenous (IV) drug use (female and heterosexual
male)’ (3) ‘homosexual/bisexual contact and IV drug
use’ (4) ‘hemophilia/coagulation disorder’ and (5)
‘heterosexual contact with a person with, or at in-
creased risk for, HIV infection’ [5]. In this hierarchy
of risk groups, cases were only assigned to the
‘heterosexual transmission’ category if no higher
ranked factors were present and the sexual contact
was known to be infected or at ‘increased risk.’ In
contrast, male homosexuality and intravenous drug
use were the basis for assignment to categories with-
out specification as to the infectiousness of the part-
ner. Thus, certain behaviors such as homosexuality
were the basis for assignment to a distinct sector or
subgroup of the population. Also notable was the
grouping together of homosexual and of bisexual
males-individuals with different patterns of sexual
behavior-into a single ‘subgroup’ of ‘homosexual/
bisexual males’ with its own ‘trends’ [lO-121. The end
result of the logic of classification utilized by the CDC
was that, in the United States and industrialized
nations, anyone who was gay or who used intra-
venous drugs became identified as a member of a risk
group, whether or not he or she engaged in behavior
that transmitted HIV.
As the societal and official response to the HIV
epidemic took shape, categories which had been
developed by epidemiologists in the course of prelimi-
nary attempts to track the spread of the epidemic
took on a life of their own and began to be used for
purposes such as AIDS education and disability
determination for which they were less appropriate
[13]. The widespread use of CDC designations of
‘subgroups’ at risk for AIDS and the accompanying
‘hierarchy of exposure’ tended to obscure the fact
that it is not the sexual orientation of people, their
national identity, or their use of drugs, but the
exchange of semen and blood that transmits the virus.
The use of these categories to characterize who was
‘at risk’-and therefore who was not at risk-diverted
attention from the vital distinction that individuals
were at risk for HIV infection not only because of
what they did but also because the person they did it
with was already infected. HIV is potentially trans-
missible to anyone who performs certain behaviors
with someone who is already infected [14].
The approach of identifying as ‘at risk’ entire
subgroups in the population provided the foundation
for a view that groups at risk could be identified and
differentiated from the ‘general population’ by their
shared culture. Ethnographers were called in not to
study the behaviors of transmission wherever they
occurred, but rather to describe what were held to be
the separate, bounded populations viewed as cultur-
ally distinct. The study of the transmission of HIV in
social behavior became the study of behavior of
members of ‘risk groups.’
THE CULTURAL CONSTRUCTION OF RISK GROUPS
It is helpful to remember that attribution of disease
to the ‘cultural other’ predates social science con-
structions of disease by hundreds of years. There
exists an ancient, explanatory paradigm that at-
tributes lethal, transmissible disease to groups seen as
culturally different from the mainstream population,
and defines those who are sick as culturally different
[15, 161. The plagues of the 14th century were at-
tributed by Christian Europe to the Jews [17]. The
cholera epidemic of 1832 in the United States was
attributed to the intemperate and sinful behavior of
foreigners [ 181.
The paradigm of attributing lethal transmissible
disease to the cultural other became incorporated
into the emergence of ‘scientific’ medicine in the 18th
century. The same ‘scientific’ logic of objectification
that conceptualizes disease as something that can be
subtracted or cut away from healthy tissue, and
which distinguishes between the healthy and the
diseased [19], allows those at risk for disease to be
seen as separate and separable from the general
population of the body politic.
 The cultural construction of AIDS risk groups
In the AIDS epidemic, we again see a deadly and
dreaded disease attributed to the culturally different
and deviant ‘other.’ Since the first cases of AIDS were
diagnosed in the early 198Os, authorities, researchers,
and writers often reported the disease as originating
from outside, wherever that was, and brought by that
which was alien. At first that meant that in places
such as France and Germany AIDS was said to be
imported-together with poppers, tight jeans and
rock music-by homosexuals from the United States
[20]. Soon the epidemic came to be seen as originating
from peoples who were seen as racially as well as
culturally distant.
Some Western researchers began searching eth-
nographies for descriptions of unusual African sexual
practices. They sought to verify that the virus origi-
nated in remote populations and to identify behavior
culturally distant from heterosexual vaginal inter-
course as the mode of transmission. The Haitian
population was treated in similar ways with an early
assumption that high prevalence of HIV infection
was a product of something culturally or biologically
Haitian rather than evidence that anyone could trans-
mit the virus through heterosexual contact. Although
much of the emphasis on establishing a geographic
and cultural origin for HIV has abated, speculation
about exotic origins continued throughout the 1980s.
For example, the editors of a 1989 book on the
epidemiology of AIDS opined that “it is easy to
suppose that the infection was first acquired by a
traveler in a land with primitive and remote areas.
Acquisition might have been especially likely in a
place where an initially harmless simian retrovirus
could have been transmitted to humans-eg.
country in Africa” [21].
Meanwhile, the logic of attributing lethal diseases
to those perceived as culturally different became
ensconced in the language of ‘risk groups.’ Individ-
uals defined as members of particular risk groups
have come to be seen as at risk because of what are
presumed to be their cultural behaviors.
The initial cultural construction of AIDS in indus-
trial countries centered on what was pictured as the
high risk culture of gay men. Early investigations of
the sexual practices of gay men arguably reflected a
legitimate, logical line of scientific inquiry regarding
AIDS transmission. However, as time went on the
continued concentration on the ‘deviant’ sexual be-
haviors of gay men served to distance both AIDS and
gay men from the oft referred to ‘general population’
[22]. At a time when many scholars had begun to
question the equation of homosexuality with social
deviance or psychiatric disorder, the intimate sexual
activities of gay men again became objects for scien-
tific scrutiny. In the United States early researchers
focused almost entirely on white, gay men living in
large urban centers, in particular San Francisco and
New York City 123,241, and generalized their sexual
behavior to all gay men. Multiple sexual partners,
sexual activities in public bath houses, extensive use
1339
of sex enhancing drugs, oral-genital contact, and anal
intercourse were said to typify the ‘lifestyles’ of gay
men [25]. Gay men were often referred to as constitut-
ing a ‘subculture’ with ‘distinct differences’ [26].
In point of fact, there was evidence from the
beginning of the epidemic that there was great vari-
ation in gay culture and that many men who engaged
in homosexual activities did not participate in the
type of activities being ascribed to gay culture. In-
deed, some men who have sex with men do not even
see themselves as ‘gay.’ Available data suggest that
gay men cannot readily be characterized by a single
set of cultural practices or values. Outside the centers
of the public gay community in particular there is
diversity of sexual practices and mating patterns.
There is some evidence even in San Francisco that
behavior of a substantial proportion of gay men
differs from the highly publicized gay life style, and
in many cases did so even before the substantiated
changes that followed the epidemic. A 1984-study,
conducted before the advent of widespread AIDS
education and prevention efforts, reported that
among men who identified themselves as ‘gay or
bisexual’ in a random telephone survey, the majority
(69%) reported “celibacy, monogamy, or no sex
leading to exchange of semen outside a ‘primary
relationship.“’ Gay men differ in the regularity and
frequency of certain ‘risky’ sexual practices associ-
ated in the AIDS literature with gay men, such as
anal sex. Moreover, these practices have also been
shown not to be restricted to gay men, and are
engaged in by many heterosexuals at least occasion-
ally. For example, a 1988 study of intravenous drug
a users in San Francisco reports that 38% had had
heterosexual anal intercourse [27].
Of course, one needs to analyze frequency as well
as the presence of a history of a given sexual behav-
ior, such as anal intercourse among heterosexuals, to
assess its epidemiological significance. It is just this
kind of information that was the objective of national
surveys of sexual practices whose funding was can-
celed by federal authorities in the United States on
the rationale that such questions are intrusive and
such information unnecessary. Such data might be
regarded by administration officials as problematic in
that they might show continuities between sexual
behavior of the ‘mainstream’ and that of ‘deviant’
subgroups. The great diversity of sexual behavior
within categories of persons such as ‘homosexual/
bisexual men,’ ‘heterosexuals,’ and ‘intravenous drug
users,’ is often unattended to but is of critical import-
ance in understanding the epidemic and developing
effective responses. Among homosexual men, for
example, it is important not to conclude from the
existence of a subgroup with many sexual partners
during the course of a year-a subgroup which was
prominent in early epidemiological case control stud-
ies-that such behavior is characteristic of all homo-
sexual men. The documentation of this diversity
should direct public discussion towards an alternative
1340 NINAGLICKSCHILLERet al,
view of HIV transmission: one that examines as risk
factors not only sexual orientation but also such
characteristics as individual risk taking behaviors,
frequency of sexual activity, number of partners, and
geographic locality (28-301.
Intravenous drug users became the next sector of
the population to be described as an AIDS risk group
with its own distinctive culture of risk. Again the
behavior, values and beliefs of a subsector of a
population were taken to typify all members of the
larger category. Descriptions of localized populations
of intravenous drug users who were impoverished
inner city inhabitants were taken to exemplify the
life-style, outlook, and drug using practices of the
entire ‘risk group’ [31].
In these descriptions the act of sharing needles was
said to be a standard practice and to have great
cultural significance. Needle sharing was character-
ized as “a central part of the subculture of drug
users-a symbol of social bonding among people who
otherwise have little occasion to trust one another”
[32]. An early article by Des Jarlais, Friedman and
Strug was often cited as evidence of the distinctness
of the subculture of intravenous drug users.
The sharing of works for injecting drugs is thoroughly
integrated into the IV-drug subculture. It starts with in-
itiation into injecting, is an important practical and sym-
bolic part of the running partner relationship, and becomes
a business in the shooting galleries, in which sharing of
works extends to persons who may not know each other.
The sharing of works symbolizes a wide range of positive
relationships among IV drug users, from the romantic
initiation, to the social bonding of running buddies, to the
mutual advantages to a user and a gallery owner [33].
Intravenous drug users were also characterized as
having a particular life style.
[Rlegular intravenous drug use quickly leads to a lifestyle
often associated with social marginality, a lifestyle where
risk-taking and danger play central roles. An authentic risk
culture develops among intravenous drug users: the risk
associated with sharing needles may, in fact, appear minor
when compared to all the other risks these people take every
day [34].
But the cultural description provided by these
accounts is questionable if generalized to all intra-
venous drug users as a group. While some intra-
venous drug users may indeed practice needle sharing
and some live on the margins, intravenous drug users
differ in their class position, gender, life style and
residence patterns. For example, descriptions of in-
travenous drug use in San Francisco report the
absence of shooting galleries [35]. While the term
‘needle-sharing’ has been used to characterize any
common use of injection equipment, the ‘renting’ that
takes place in shooting galleries clearly constitutes a
different kind of behavior than the use of common
‘works’ in the course of an intimate relationship or
network of friends.
In light of these findings, a number of researchers
have come to modify their earlier constructions of a
subculture of intravenous drug use, noting the vari-
ability in needle use patterns and deemphasizing the
symbolic meaning of needle sharing in favor of
greater emphasis on the role of practical contingen-
cies of drug use (S. Friedman personal communi-
cation). These contingencies include the illegality of
possession of needles; the risk of being caught with
needles in one’s possession; the scarcity and expense
of clean needles; their fragility when concealed, car-
ried, and used repeatedly; and the need to verify to
the drug dealer that one is a user, not a cop, by
immediately shooting up [36]. This example can be
seen as an example of a paradigm shift, at least
among some of the more sophisticated researchers,
from the emphasis on culture as generative of risk to
a focus on the way in which ‘risky’ social behavior is
shaped by external social and economic context. The
less differentiated and more global view of ‘drug
abuse culture,’ however, continued to be widely held.
Racial stereotyping accompanied the allocation of
segments of the population into risk groups. Because
most ethnographies of HIV infected intravenous drug
users have been conducted in inner city neighbor-
hoods and most surveys of homosexual men have
been done in the gay communities of major cities, the
literature on HIV infected intravenous drug users
tended to be of ‘minorities,’ or ‘blacks and Hispan-
ics,’ while homosexuals were seen as white and
middle-class. For example, an article on AIDS in the
work force in New Jersey states that
Gay men and IVDUs (and their sexual partners) constitute
separate at-risk populations. Gay men are typically white,
well-educated, professionally employed, and financially suc-
cessful. IVDUs and their sexual partners are more often
black or Hispanic, poorly educated, and either unemployed
or employed in jobs that require minimal skills or are poorly
paid [37].
Data on the racial composition of risk groups present
a more complex picture; IVDUs are not all minority
and minority PWAs are not all IVDUs. For example,
Brown and Primm found in one study that almost
half (48%) of the ‘Hispanic’ population with AIDS
had reported “homosexual/bisexual behaviors” [38].
Schilling and his colleagues reported that “among
blacks and Hispanics with AIDS, 37% are heterosex-
ual IV drug users, compared with 6% of heterosexual
Anglos (non-Hispanic whites)” [39].
The category ‘Hispanic’ is widely used in analyses
of the distribution of HIV infection and of AIDS.
Because of the diversity of groups lumped together
into this category of ‘ethnicity,’ it can obscure rather
than clarify understanding of prevalence patterns
[40]. Selik et al. reported that:
Although the risk of AIDS is elevated in U.S. Hispanics, the
present study shows that the risk in persons of Mexican
ethnicity is similar overall to that in the reference group of
Whites who are not Hispanic, but varies by region . . . The
high proportion of cases in heterosexual IVDAs found
among Hispanics overall primarily reflects the high pro-
portion in persons of Puerto Rican ethnicity (birth or
ancestry). The strong association between persons of Puerto
Rican ethnicity and heterosexual IVDAs with AIDS may
 The cultural construction of AIDS risk groups
well be related to the concentration of both in the Northeast
region . . . The Puerto Rican’s geographic location at the
center of the AIDS epidemic in heterosexual IVDAs could
have exposed them to a greater risk of IVDA-related AIDS
[411.
Yet AIDS researchers have continued to speak about
the need to study ‘Hispanic’ culture rather than
geographically defined risk as an urgent task in
stopping the spread of the epidemic.
THE VOCABULARY OF DISTANCE
Having defined AIDS risk groups as populations
who are culturally different, some AIDS researchers
then described these risk groups with a vocabulary
that made their actions seen exotic and separate from
the norms and activities of the mainstream. Thus,
both gay men and intravenous drug users were often
not described in having ‘families,’ both the norm and
cultural ideal of society. Households of gay men, for
example, were often not characterized as ‘family’
units, even when ‘lovers’ lived together for decades as
a household unit with commitment to remain to-
gether in sickness and health.
Drug users were often said to have ‘sexual part-
ners,’ rather than either lovers or spouses. Conviser
[42], for example, described the subordination of the
female ‘sexual partner’ as if it were unlike the position
faced by many women in the rest of the society:
In the subcultures in which intravenous drug use is wide-
spread, sexism adds to the difficulty of bringing about . .
behavior change. In these subcultures women are expected
to allow men to determine how sexual intercourse is to be
conducted; women who ignore this expectation risk physical
abuse [36].
While it is useful in talking about transmision to
look at all sexual relations irrespective of whether
they are legally sanctioned by marriage, the vocabu-
lary which reduces long time mates of gay men and
intravenous drug users to ‘sexual partners’ is cultur-
ally distancing. Such terminologies contribute to the
popular images of gay men as sexually compulsive,
and intravenous drug users as strange, unsavory
creatures who are found on the street, long separated
from home and family.
Not only have spousal matings often been removed
from a ‘family’ context and thus defamiliarized, but
there have been virtually no descriptions ofthe relations
between members of these risk groups and their
families of origin. Mothers, fathers, sisters, brothers,
grandmothers, aunts, uncles, cousins and children
have seldom appeared in the literature unless the
topic is children who have contracted AIDS at birth
from their mother. To place individuals outside the
bound of family is to place them outside the human
family, to dehumanize them, to turn actor into object.
ANOTHER READING
Yet there is another way to read the culture of
those said to be members of risk groups. Viewing the
1341
same people with a different vocabulary and from a
different vantage point, one that does not objectify
and distance, the behavior of the people in ‘risk
groups’ becomes part of a description of the behavior
of the much referred to but little described ‘general
population.’
This perspective is supported by results from a
survey of a random sample of persons with diagnosed
AIDS in New Jersey. Members of this population
were found to be diverse in their cultural norms,
patterns and behavior; this diversity cut across their
designation into risk groups and their categorization
along racial and ethnic lines. A picture emerged of a
heterogenous population with great variability in
life-styles, level of involvement in gay or IVDU
‘cultural’ worlds, and family relationships. While
some drug users and some gay men had lived on the
street, others were found in the suburbs and had
steady employment histories. A diversity of patterns
of mating, sometimes stable and monogamous, some-
times with multiple partners, was found within each
category of sexual orientation and drug use history.
New Jersey proves an important place in which to
examine the concept of culturally distinctive AIDS
risk groups. A high incidence state with the fifth
largest number of AIDS cases among states, its
pattern of HIV infection resembles the direction in
which the national pattern of HIV infection is chang-
ing. While nationally homosexual men account for
the largest subgroup of AIDS cases, in New Jersey
intravenous drug users are the largest group, and the
percentage of women with diagnosed AIDS is higher
than the national figures and growing.
The study was designed to allow persons with
AIDS to speak first hand about the types of resources
they have available and to articulate their needs for
services and support. Working with the New Jersey
Department of Health and its AIDS Registry, a
random sample of 475 individuals who had been
reported with full blown AIDS (as defined by the
CDC) and who were not known to have subsequently
died was drawn in four waves between October 1988
and October 1989. Of the 475, 115 (or 24%) were
determined by subsequent investigation to have died
before the date of sampling. Another 45 (or 9%)
could not be contacted because they had moved out
of state, or because their records were unavailable or
closed on the request of their health provider or state
surveillance officer. Individuals were located with the
assistance of health providers aware of the respon-
dent’s diagnosis. Of the 315 who remained to be
located, 77 had died before they could be contacted
and 72 could not be located. Of those we were able
to locate, the majority (107) agreed to be interviewed,
with only 35 refusing and 24 proving to be too sick
to be interviewed. Modest subject fees were paid.
In terms of age, sex, and race/ethnicity, the 107
persons interviewed resemble the demographic profile
of persons with AIDS in New Jersey not known to
have died at the time of sampling [43]. Table 1
1342 NINA GLICK SCHILLER
etal.

compares the demographic profile of the total New internal variation within each of the ‘risk groups.’
Jersey cases, the entire random sample and the 107 Prior to diagnosis 32% of the intravenous drug users
respondents. Seventy-seven percent of the 2759 per- fell into the lowest income category, earning less than
sons with AIDS reported alive in New Jersey at the $10,000, while only 15% of gay men earned less than
time of the sample were male and 23% were female. $10,000. Thirty-three percent of the gay men and the
They were categorized as being 34% white, 53% same proportion of intravenous drug users were in
black, and 13% Hispanic. Twenty-seven percent were the middle income group of $lO,OOO-%20,000.Half of
catgorized as homosexual/bisexual; 56% as intra- the gay men (52%) and a little more than one-third
venous drug users (IVDUs); 3% as homosex- of the intravenous drug users (35%) had incomes
ual/bisexual IVDUs; 9% as heterosexual; and 2% as from $30,000 to $50,000 prior to diagnosis. While
having contracted the disease through blood transfu- 40% of the gay men had finished college as compared
sions or hemophilia. to 3% of the intravenous drug users, proportions who
The respondents were 75% male and 25% female. had not completed high school were similar across
Thirty-six percent were categorized as white, 49% as these risk groups: 28% of the intravenous drug users
black, and 15% as Hispanic. They were classified as had not gone beyond high school as compared to
28% homosexual/bisexual; 55% intravenous drug 23% of the gay men. Twenty percent of the whites
users (IVDUs); 6% homosexual/bisexual IVDUs; 8% and 19% of the Hispanics, as compared with only 4%
heterosexual, and 4% recipients of blood transfusions of the blacks, had college diplomas. Thirty-seven
or hemophiliacs [44]. In the subsequent descriptions, percent of whites and the same proportion of blacks
men reporting both ‘homosexual/bisexual’ trans- had less than a high school education; both these
mission and intravenous drug use (6%) are grouped groupings differed from the Hispanics, 69% of whom
with ‘intravenous drug users.’ had not finished high school.
Among the 107 interviewed, 64% of the blacks and When asked about the occupation they had worked
63% of the whites reported intravenous drug use as in for most of their life, very few of our respondents
a mode of transmission. The proportions of the in any of the risk groups reported professional or
various racial/ethnic groupings who were listed as managerial careers. While the majority of gay men
having engaged in homosexual activities also did not (57%) reported white collar occupations, only seven
vary dramatically: 38% of Hispanics, 32% of whites had performed supervisory or skilled work. Most of
and 21% of blacks. Thus, a single mode of trans- the white collar occupations reported by gay men
mission was not the province of a particular were best categorized as clerical with entry level types
racial/ethnic group. Those interviewed had a range of of positions such as file clerk, data entry, and stock
pre-diagnosis incomes, educational and occupational clerk predominating. Almost a quarter of the gay
histories, living arrangements, and life styles that cut men had been blue collar workers (23%), while the
across designations of risk group and race/ethnicity. remaining 20% had been service workers. About
Those with a history of drug use had been poorer one-fifth of the intravenous drug users reported
pre-AIDS than gay men, but there was significant white collar positions with seven performing supervi-
sory or skilled occupations including that of man-
ager, supervisor, bookkeeper, physician’s assistant,
Table 1. Demographic profile: total NJ, random sample, and inter-
viewed respondents and artist. About half of the intravenous drug users
Random Interviewed
had been blue collar workers; 23% had been service
Total NJ’ sample respondents workers.
(n =$59) (n yT5) (n = 107) Given the image of intravenous drug users as
%
marginally employed and unskilled, it is important to
Gender note that most hd occupations requiring some skill
Male 77 77 75
Female 23 23 25 including machinists, sheet metal workers, welders,
Race/Ethnicity roofer, mechanics, brick masons, and plumbers. Only
White 34 34 36
Black 53 52 49 13% had been unskilled laborers. Only a few reported
Hispanic 13 14 15 predominately supporting themselves through illegal
Asian * 1 I activities on a long-term basis. Others had been
Mode of transmission
Homosexual/bisexual 2-l 25 28 involved in theft, drug dealing, or prostitution to
Intravenous drug use 56 56 55 support drug habits, but had other occupations they
Homosexual/intravenous 3 4 6
Heterosexual 9 12 8
had pursued before or during their drug addiction. A
Transfusion/hemophilia 2 3 4 substantial sector of the sample had relatively stable
Other 3 1 - housing histories, and intravenous drug users did not
Age greatly differ from gay men in this respect. Fifty-five
20-29 years 19 21 18
30-39 years 52 53 48 percent of the gay men and 42% of the intravenous
40-49 years 19 20 25 drug users had been living in the same residence for
50+ years 6 6 9
3 or more years. One-quarter of the intravenous drug
‘Profile of individuals in New Jersey Registry not known to have died
October 1989.
users had been in the same residence for more than
‘Under 1%. 5 years. Both sectors of the population could be
 The cultural construction of AIDS risk groups
found living in neighborhoods that ranged from the
suburbs to the inner city.
Sixteen of the respondents had been homeless at
some point since they received an AIDS diagnosis; all
but two of those were intravenous drug users. At the
time of the interview only three respondents were
homeless although 11, all intravenous drug users,
lived in some form of congregate housing including
shelter, single-rented room, nursing home, detoxifica-
tion center and county jail. Several of the individuals
in this marginal type of housing had contact with
family members and several of the respondents who
had been homeless had been taken in by their
families.
In their educational, occupational, and residential
histories, the intravenous drug users do not emerge as
a homogeneous group of hustlers or street people
with a particularized ‘subculture.’ The data collected
on their use of shooting galleries and sharing of
needles also do not substantiate a picture of a homo-
geneous drug using subculture. While 61% of our
respondents reported a history of intravenous drug
use, only 38% of the sample reported ‘sharing’
needles in shooting galleries and only 8% did so often
or usually. The 22 intravenous drug users who had no
experience in shooting galleries described needle
sharing not as a special form of bonding between
drug users but as one aspect of ongoing social
relationships. The most common setting for needle
sharing was with friends (in 77% of the cases). Also
common was intravenous drug use as a part of a
sexual relationship (in 55% of the cases). Twenty-
three percent shared needles with relatives. The
‘bonding’ done in these contexts often added drug use
to other aspects of ongoing relationships rather than
necessarily being the initiating event or exclusive
focus of these relationships.
Women emerge in this study not primarily as
fleeting sex partners but as intravenous drug users, as
long term mates or wives who contracted AIDS
through heterosexual relations, and as wives, long
term mates, mothers or sisters who provided care for
infected persons. While the majority of the 27 women
with AIDS interviewed reported a history of intra-
venous drug use cases (63%), with 30% categorized
as heterosexual contact and 7% as transfusion cases,
it is impossible to say how many of the drug using
heterosexual women (or men) actually were infected
by sexual relations. Women frequently told of a
diagnosis of AIDS or episodes of sickness leading to
breakups in marriages and relationships. While 8%
of women were currently married and 13% were
currently living with a spouse or mate, 37% had past
or present legal marriages.
We found that almost all respondents had ongoing
ties with their families. This similarity cuts across risk
group, racial and other demographic distinctions; it
is a similarity people with AIDS share with the
‘general population’ and an important indicator that
they are culturally a part of this population, Of those
1343
persons living in the community, 64% were living
with adult family members. Most of these people
were living with consanguineal kin rather than part-
ners, whether their mode of transmission was intra-
venous drug use, homosexual activity, or both.
Fifteen percent of the men were married at the time
of the interview and 31% were living with their
spouse or partner. Forty-four percent of those living
in the community lived only with consanguineal kin
and 27% lived with a life partner (6 of these house-
holds also included consanguineal kin). Three percent
lived with non-kin (defining non-martial domestic
partners as kin). Most of the shared households
included female household members who provided
assistance in daily household tasks.
Only 22% of the gay men and 18% of the intra-
venous drug users had as adult co-residents only a
mate or partner. Five of the households were joint
family households with partners and consanguineous
kin found in the same residence; in three of these
households the respondent was an intravenous drug
user and in two the respondent was a gay male.
Family ties for the respondents extended outside of
the household. About two-thirds of the sample visited
or spoke each week with relatives who did not live
with them. Of these, sisters were cited most fre-
quently. It should be noted that statistics on living
arrangements undercount the close proximity of fam-
ily; in several instances respondents lived in the same
building or down the street from members of their
families.
These data about family relationships help
explain how most people with AIDS in New
Jersey manage to cope with their illness. Most survive
and live in the community because of assistance
from kin, particularly from women. Little research
has been done on this topic, perhaps because of
the continuing projection of people with AIDS as
isolated street-living junkies or promiscuous gay
males. The paradigm of otherness has had important
consequences for the perception of the affected popu-
lation.
DISCUSSION: CULTURAL ANALYSIS AND CULTURAL
CRITIQUE
For several decades the claim of biomedicine to be
the measure against which the health beliefs of the
world’s peoples should be judged has been critiqued
by various disciplines within the sociomedical sci-
ences. Work in medical sociology recognized the
social as well as the biological components of disease
and patients came to be seen as opting in or out of
a ‘sick role’ [45,46]. ‘Illness’ came to be viewed as a
‘behavior’ that could be distinguished from the
physiological response attributed to ‘disease’ [47].
While the medical world separated physical disease
from mental illness, nature from culture, and self
from society [48], social scientists increasingly focused
on ways in which physical disease and mental illness
1344 NINA GLICK SCHILLER
were mediated through socially constructed cat-
egories [49-5 11.
A continuing theme in social medicine has been the
analysis of the use of biomedical and psychiatric
categories for the social control of sectors of the
population [52, 541. The development of a critical
medical anthropology has contributed to this analysis
by paying particular attention to the way in which the
definition of illness in terms of a biomedical model is
established, maintained and contested [55-581. The
analysis of the relationship between the social con-
struction of scientific categories and power has built
on Foucault’s historical descriptions of the manner in
which biomedicine came to extract the patient from
the society, and to individualize and objectify human
experience [ 131.
By the time HIV disease had been recognized as an
epidemic, some of the earlier relativistic sociological
accounts of illness-which had at times reacted
against medical models by going to an opposite
extreme in which the biological aspects of illness were
discounted altogether-had lost some of their intel-
lectual influence. “The weight of scholarly opinion,”
according to Charles Rosenberg, a medical historian,
“has in the past decade shifted toward an emphasis
on biological factors in the understanding of disease
and human behavior” [59]. He notes that relativist
arguments began to be seen by social historians as
‘familiar,’ ‘cliche,’ and ‘increasingly sectarian.’
AIDS has contributed to the renewed credence
given to biomedicine because:
. . the biomedical aspects of AIDS can hardly be ignored;
it is difficult to ignore a disease with a fatality rate approach-
ing 100% [60]. AIDS has, in fact, created a new consensus
in regards to disease, one that finds a place for both
biological and social factors and emphasizes their inter-
action. Students of the relationships between medicine and
society live in a necessarily post-relativist world [53].
While the approach advocated by Rosenberg
sounds balanced, with ‘social’ as well as ‘biological’
factors now contributing to our understanding of
diseases, the way in which ‘social factors’ have been
used in explaining illness in this ‘post-relativist’ world
has often been seriously flawed; the construction of
AIDS risk groups conceived as having distinct ‘cul-
tures’ serves as a case in point. The reification of
social categories as ‘risk groups,’ and the tendency to
distance these groups from the ‘general population,’
have contributed to the complacency and denial of
the reality of risk of infection among members of this
‘general population,’ even those whose geographical
location and (heterosexual) behavior places them at
elevated risk.
Debates in anthropology about the use of culture
as an explanatory variable have much to say that is
relevant to the approach to culture currently being
employed in the study of AIDS risk groups. In some
areas of anthropology such as the study of ethnic
identity, a reexamination of bounded conceptualiz-
ations of culture has been underway for some time
etal.
161-641. Certainly since Barth [65], boundaries are
understood to be culturally constructed rather than
defined by and coterminous with cultural differen-
tiation. More recently the focus has been on whether
or not culture is to be seen as the primary explanatory
variable, sui generis [66], or whether it would be
better to emphasize the ways in which patterns of
human behavior and beliefs both shape and are
shaped by larger social, political, and economic forces
[67,68]. In one form of medical anthropology that
Singer and his colleagues have labeled ‘medical cul-
turalism,’ culture is seen as determinative, and the
search for explanations for belief and behavior is
maintained within the boundaries of the culture
which are treated as givens. In contrast, critical
medical anthropologists call for an “appreciation of
culture as an inventive and creative process that
unfolds within particular historical, political-econ-
omic, and social contexts” [15, 691.
The necessity to directly address the position and
role of the observer has been highlighted in the work
of ‘reflexive’ anthropologists. As politically conscious
social scientisits have done before them [70, 711,
today’s ‘reflexive’ anthropologists argue against the
concept of a value-free social science and criticize the
objectifying manner in which anthropologists have
created cultural ‘others’ [72]. The concept of culture
has long been used to portray colonized peoples as
exotic and distant, reinforcing their physical subordi-
nation with ideological domination [73]. In a class-
based society, culture is not a politically neutral
concept. Recognizing researchers as political actors
and culture creators can be useful if it leads, not
towards a retreat into relativism, but towards a
critique of the political uses of cultural constructs
within the AIDS epidemic.
To make such a critique and examine the potential
misuses of ethnography is not to oppose culturally
sensitive AIDS counseling or education. Appropriate
prevention efforts must take into account the
diversity of the population. However, effective
prevention requires examination of the contexts of
‘risky behavior’ as well as the implementation of
efforts to encourage behavior change at the individual
level. Societally created contexts for risk behaviors-
such as law enforcement strategies which actually
encourage needle sharing-require critical examin-
ation.
The tendency to stereotype cultural behavior
within ‘risk groups’ has reified the concept of culture,
and has identified the cultural behavior of internally
diverse categories of persons with that of conspicu-
ously extreme sub-groups at one end of a behavioral
continuum. Stereotyping and reification provide a
misleading backdrop for policy formation. This ten-
dency to distance the ‘general population’ from ‘risk
groups’ has acted as cross-purposes to public health
goals, facilitating public definitions of the HIV epi-
demic as a problem which concerns others, not
oneself and one’s own ‘group.’
 The cultural construction of AIDS risk groups
Acknowledgements-We thank the New Jersey Department
of Health and particularly Ronald Altman and Samuel
Costa for making this study possible. In addition, an NIMH
post-doctoral fellowship award to Dr Glick Schiller pro-
vided support for this research from 1988-1991 at Rutgers
University, Institute for Health, Health Care Policy and
Aging Research. We would also like to thank the health care
providers who helped us with respondent location. Most of
all, we would like to thank the people with AIDS who
agreed to speak with us.
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