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OCR for page 372
7
Social Barriers to AIDS Prevention
The previous chapters have discussed in detail the two primary modes
of transmission of HIV infection: sexual activity and TV drug use. At
present, controlling the spread of HIV infection requires both a scien-
tific understanding of these behaviors and a societal commitment to
behavioral intervention sufficient to reduce the transmission of HTV
infection. Yet fulfilling these requirements will be difficult: cultural
and social beliefs and feelings about these behaviors can generate
conflict that impedes efforts to understand them and interventions
to modify them.
Initially, this chapter describes some of the societal conflicts that
have characterized America's response to the AIDS epidemic. Sum
sequently, from a more conjectural perspective, it considers ways in
which an understanding of these conflicts may be informed by a his-
torical view of stigmatization as it has characterized other epidemics.
SOCIAL RESPONSE TO EPIDEMICS
It is important to clarify our use of the word epidemic, which is
now commonly associated with the presence of HTV infection in the
U.S. population. (For example, the recent presidential commission
was namer! the Presidential Commission on the Human Tmmunode-
ficiency Virus Epidemic.) In fact, as ShiTts (1987) reports, gaining
official recognition of AIDS as an epidemic in the United States was
not easy, although epidemic is loosely used in everyday discourse.
For most people, it means a disease that aiTects a large number of
people; thus, debates can arise over how large the affected population
must be for a health problem to be called an epidemic. Recently, for
372
OCR for page 373
SOCIAL BARRIERS TO PREVENTION ~ 373
example, columnist James J. Kilpatrick noted that many more per-
sons are afflicted with heart coalitions and cancer than with AIDS,
which prompted him to write, "What's the big deal about AIDS?" ~
In the scientific sense, epidemic disease refers not so much to the
number of people affected but to the unexpected increase of a disease
in a community. Thus, epidemic disease is defined as "the occurrence
in a community or region of cases of an illness, specific health-related
behavior, or other health-related events, clearly in excess of normal
expectancy" (Kelsey et al., 1986:2i2~. Most commonly, an epidemic
disease appears unexpectedly, and the number of affected people
increases rapidly within' the population. Given the record of the
last seven years, HIV infection clearly fulfills the definition of an
· -
eplc .emlc.
The scientific definition, however, must be supplemented by the
historical meaning of epidemic. That meaning is vividly captured by
the etymology of the word, which in ancient Greek means "upon the
people." Historically, many epidemics have fallen on the community
as great calamities, affecting not only the individuals in the com-
munity but the structure of the community itself. A debilitating or
lethal disease, striking many persons suddenly and often inexplica-
bly, throws the community into disorder. An epidemic in this sense is
quite literally a social, cultural, and political disease (McNeil, 1976~.
The devastating effect of an epidemic on a community can evoke
strong political and social responses. During the plagues of medieval
Italy, civil authorities exerted a strong, even draconian influence
(CipolIa, 1973~. Similarly, cluring the cholera and yellow fever epi-
demics of nineteenth-century America, business and commercial in-
terests moved to control the disaster (Rosenberg, 1962~. In almost
all major epidemics, community life has been seriously disrupted by
the presence of a mass of seriously ill and dying people. At the
same time, an epidemic necessitates the rapid mobilization of the
community to counter the spread of illness and death.
Such mobilization is never easy. Social, cultural, political, and
economic institutions are built for the day-to-(lay activities of com-
munal living; they are not quickly or easily modified to deal with
catastrophe. Indeed, because catastrophe is so threatening to the
familiar, these institutions may resist being reshaped to meet the
needs of a crisis. A "business-as-usual" attitude may obscure the
harsh truth that the community is seriously threatened, and familiar
ways of dealing with familiar problems may be applied to what is
James J. Kilpatrick, "Aren't We Overreacting to AIDS?," Washington Post, June 9,
1988:A19.
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374 ~ IMPEDIMENTS
really novel or out of the ordinary. Thus, in most major epidemics
of which there are accurate histories, medicine was slow to realize
that it was confronting an unfamiliar problem; disease was diagnosecT
incorrectly, and the prevention or therapy measures usec! to contain
it were consequently inadequate (Winslow, 1943~.
The AIDS epidemic has also evoker! a traclitional response: it has
been clefinec! as primarily a meclical problem, to be solvecT primarily
by meclical science. As this report has stressed, however, AIDS is also
a social problem. The virus is transmitted through human behaviors;
as such, the problem neecis to be solvecT by social means that facilitate
change in risk-associatec! behaviors. Yet the social response to the
AIDS epidemic in America has proclucec! a number of conflicts ancT
paradoxes that may result from social processes similar to those
that have characterized the history of societal responses to other
· ~
epic Emus.
As notecT above, an epidemic is properly unclerstoocT as the cases
of a disease that occur in unexpectecITy high numbers in a community.
Epidemics spread from place to place, ancT the term pandemic is used
to describe excess disease in many countries. Many epidemics rage
for a time clays, months, years anc! then subside. Sometimes cases
disappear altogether or become increasingly rare as smallpox anc]
diphtheria have clone in the United States. Other epidemic diseases
"settle in" ancT become an expecter! part of the illness burden that a
society bears. In this situation, the number of cases cloes not show
the rapid increase that originally callecT attention to the epidemic;
instead, the disease persists at a relatively constant level, becoming,
in scientific terms, "endemic"—literally, "c~welling with the people."
Some people believe that the nation can relax, once it is an-
nouncec! that "the epidemic is over." Yet such an announcement can
be ciangerously ambiguous. If a disease disappears or is conquered by
mecTical science, then relaxation is appropriate: for example, yellow
fever, which clevastatecT the Unitec! States in the nineteenth century,
is no longer a threat. If the disease becomes endemic, however, it
continues to cowers in the community, cloing its damage less cTramat-
ically but just as surely. The mutation of a disease from epidemic
proportions to endemic status is thus cold comfort. It is likely that
HIV infection will be endemic in the United States for a Tong time
and will also continue to be epidemic in certain groups.
The following section offers examples that illustrate some of the
ways in which social barriers have already impeded effective responses
to the AIDS epidemic an(l ways in which such barriers will hinder
attention to the disease in the future if AIDS becomes endemic.
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SOCIAL BARRIERS TO PREVENTION ~ 375
COMMUNICATING ABOUT SEX ~
Reticence about discussing sexual issues is common among Amer-
icans. Because HIV infection is spread by sexual activities, frank
discussions of AIDS have suffered from that reticence, a factor that
has limited the public debate necessary for political action. Even
more serious, however, is the broacIly accepted notion, shared by
"liberals" and "conservatives" alike, that government simply has no
business dealing with sexuality. Liberals maintain that sexuality is
a private matter between consenting adults and that police power
has no place in the bedroom. Conservatives hold that sexuality is a
matter of values and is best dealt with in the setting of a family's
moral and religious beliefs; the schools, or any other public agency,
have no right to usurp the famiTy's educational role. In acIdition,
some major religious bodies claim the sexual education of adherents
as their exclusive domain; sometimes these bodies even object to ed-
ucational efforts that are not directed specifically at their adherents
but that might, in their view, "taint" them or Tower moral standards
within society in general. This view makes discussions of sexuality
religiously sensitive as well. Thus, from both ends of the political
spectrum, government action related to sexuality is problematic. In
addition, the United States has a long history of institutional barriers
to communication about (as well as treatment of) sexually transmit-
ted diseases. The examples that follow are from Brandt (1987~.
. In 1822 the Massachusetts General Hospital exclucled all venereal
disease patients from admission. During the period 1851 to 1881,
syphilitics were admitted upon special approval of the board of
trustees, but they were required to pay double rates. Reviser]
rules in 1881 again forbade their admission (p. 43~.
. In 1912 the U.S. Post Office confiscated Margaret Sanger's pam-
phiet What Every Girl Should Know because it considered! the
references to syphilis and gonorrhea "obscene" under prevailing
laws (p. 24~.
. The film "Fit to Fight," the centerpiece of anti-venereal disease
propaganda during World War I, was decIare(1 obscene by the
New York State BoarcI of Censors a ruling that was upheld
by the circuit court. New York License Commissioner John
F. GiTchrist told the court: "The fact that a small belly of
specialized medical opinion supports the picture . . . does not
free a given picture from the vice of violating the stanciards of
morality" (p. 124~.
OCR for page 376
376 ~ IMPEDIMENTS
.
.
In November 1934 the Columbia Broadcasting System scheclulecT
a radio appearance by New York State Health Commissioner
Thomas Parran, Jr. Parran planned to review the major prob-
lems confronting public health officers. That talk was never
delivered. Moments before air time, CBS informed Parron that
he could not mention syphilis or gonorrhea by name during the
broadcast (p. 122~.
During the 1960s the American Medical Association instituted
a publicity campaign for the control of syphilis and gonorrhea,
but it deleted the names of the diseases- from its advertisements
(p. 176~.
. In 1964 NBC canceled plans for a two-part drama on two pop-
ular series ("Dr. Kildare" and "Mr. Novak") because the story
involved a high school student who contracted a sexually trans-
mitted disease. The NBC network spokesman claimed: "If the
cirama were to be vaTicT, it would have to contain passages and
dialogue, including a discussion of sexual intercourse, that the
network considers inappropriate for television" (p. 176~.
. In 1982 the Texas State Commission of Education recommended
deletion of all references to venereal disease in its textbooks.
The deputy commissioner stated: "The bottom-line issue, is
when you're talking about sexually transmitted diseases you're
relating it to 'How do you get it"' (p. 176~.
In the past several years, a number of examples reveal how
potentially effective AIDS education activities were prohibited or
delayed because of similar social barriers. The following section
considers three: (1) the refusal to accept condom advertising on
network television; (2) requirements that federal AIDS education
materials be phrased in ways that are inoffensive to most educated
adults; and (3) attempts to use federal AIDS campaigns that present
factual information about HIV transmission to deliver a message
about desirable moral behavior. The final section of the chapter
considers some of the lessons learned from past epidemics and how
they can be applied to AIDS/HTV.
BARRIERS TO ACTION: RECENT EXAMPLES
Condom Advertising on Network Television
Television is a major source of information in U.S. society. Yet televi-
sion coverage of AIDS is currently limiter! to dramatic presentations,
news broadcasts, and public service announcements—often with the
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SOCIAL BARRIERS TO PREVENTION ~ 377
very limited message that viewers should "find out" about AIDS.
The role of sexuality is seldom discusser! explicitly, and TV networks
refuse to accept commercial advertisements for condoms.
Cultural reticence about sexuality strongly influences the mass
meclia. Until recently, direct references to sexual acts were sedulously
banned from newspapers; motion pictures were carefully censored by
the "Hayes Office" to ensure that visual and verbal sexuality were
drastically muted. Television was equally restrictive. In the last two
decades, there has been less reticence in TV dramatic presentations
and in advertising, but network executives continue to insist that
their audiences are not ready to accept certain sorts of ads.
During 1987, representatives of the broadcast media testified
before the House Subcommittee on Health and the Environment
regarding their policies toward paid advertisements for condoms.2
The broadcast representatives states! that, historically and currently,
the television networks had endeavored to accommodate the chang-
ing views of their audience; nevertheless, they concluded that the
AIDS epidemic had not yet sufficiently changed their audiences' sen-
sitivities about condom advertising and that they could not support
it. Thus, one network representative, Alfred R. Schneider of ABC,
stated:
tA] significant portion of our viewers feel contraceptive commer-
cials are inappropriate or offensive, because they appear within or
adjacent to programs that they may be viewing with their fam-
ilies, and these commercials appear without warning and out of
context. These concerns have been the basis for our long standing
policy against carrying such advertising on the ABC Television
Network. (U.S. House of Representatives, 1987:48)
Yet despite this advertising policy for a sexual prophylaxis, tele-
vision soap operas and dramatic presentations sometimes involve sex-
ual material that might be judges! inappropriate or offensive by some
viewers. Television soap operas, for example, frequently depict erotic
ant! adulterous encounters; yet several of these shows have become
prime-time success stories with large audiences. Indeed, television
series like "Dallas" and "Dynasty," which feature characters who
acquire several sexual partners during a single season, might prove
an icleal context for advertisements that promote responsible contra-
2Testimony was provided by Ralph Daniels, Vice-President, Broadcast Standards, Na-
tional Broadcasting Co., Inc.; George Dessart, Vice-President, Program Practices, CBS
Broadcast Group; and Alfred R. Schneider, Vice-President, Policy and Standards, Cap-
ital Cities/ABC, Inc. For the text of their testimony, see U.S. House of Representatives
(1987~.
OCR for page 378
378 ~ IMPEDIMENTS
ceptive behavior and preventive action against sexually transmitted
diseases. Careful scheduling of condom advertisements might go
a long way toward reaching audiences who would be comfortable
with discussions of sexuality. Furthermore, since audiences may
be more influenced by the thematic content of programs than by
advertising, television shows particularly those whose characters
engage in behaviors that risk the transmission of HIV infection-
could perform a public service by dealing frankly with the issue of
condom use.
Although the major television networks will not accept commer-
cial advertising for condoms,3 ciata from a number of public opinion
polls indicate that a substantial majority of American adults would
not be offended by condom advertisements (Table 7-1~. A 1987 As-
sociated Press survey, for example, found a 2-to-1 majority in favor of
condom acts on television; numerous other national surveys support
these findings. In fact, the proportion of American adults who indi-
cate that they would object to condom advertisements on television
(17 to 32 percent) is no greater than the proportion (32 percent) who
object to ads for products that are now widely advertised on network
television (e.g., tampons).4
Communicating with Inoffensive Lance
_ O O
Because HIV is transmitted by sexual behavior, education about
transmission must refer to that behavior in a manner that can be
understood and retained by the audience. In 1986 the TOM/NAS
report Confronting AIDS recommended the removal of impediments
to the use of frank and explicit language in AIDS education. These
impecliments, however, have proved quite resistant.
Historically, there has been a strong social reluctance in the
3Recently, the three major television networks agreed to broadcast a public service
advertising campaign that promotes the use of condoms to prevent the spread of HIV
(see R. Rothenberg, "3 Networks Agree to Run Condom Ads in AIDS Fight," New York
Times, October 1, 1988:35~. This change of policy is commendable. There is more that
can be done, however, including permitting condom manufacturers to advertise their
products.
40f the 1,348 adults interviewed in a national survey conducted by the Associated Press
between June 1 and June 10, 1987, 32 percent found television commercials for products
other than condoms to be objectionable; most frequently cited were "feminine hygiene
products" (tampons, sanitary napkins, and the like). Questions were worded as follows:
"Are there any commercials other than condom advertisements now on TV that you find
objectionable?" and "What other commercials are objectionable to you?" (The second
question was asked only of those who said "yes" to the previous question.)
OCR for page 379
SOCIAL BARRIERS TO PREVENTION ~ 379
United States to speak or write about sexuality in explicit terms.
Despite recent indications of greatly increased tolerance for sexual
explicitness in the media and literature, that reluctance remains
strong in much of the population; it is particularly strong in instances
that involve the education of children and adolescents. Thus, public
discussion of the modes of transmission of, and methods of protection
against, HIV infection is marked by omissions and circumlocutions:
the omissions include a lack of reference to homosexuals in some
messages; the circumlocutions include use of the phrase "exchange
of bodily fluids" in early discussions as a euphemism for sexual
intercourse with ejaculation, among other things (Check, 1987~.
The problem of explicit language is undeniably complex. To be-
gin with, the term explicit is itself unclear. It may mean any direct
reference to sex, sex organs, or sexual activity. It may refer to the
use of colloquial or common words rather than technical or medical
terms. It may mean the use of slang or "crude" terms. In addition,
the choice of words in a message may be dictated by diverse commu-
nication goals. Clarity of expression may require the use of a certain
vocabulary; credibility with certain audiences may require use of a
different vocabulary. Sustaining interest an<] attention or making
points forcefully and unforgettably would, again, require a certain
vocabulary and style. Thus, educationally effective language must be
measured by several criteria. Unfortunately, the only measurement
criterion urged by opponents of explicit language seems to be polite-
ness. The committee believes that, cluring an epidemic, politeness is
a social virtue that must take second place to the protection of life.
The use of frank language in AIDS education has been hampered
by federal guidelines adopted in response to congressional pressure
that restrict all language used in AIDS education in the United
States. The fecleral language guidelines that are used by organiza-
tions receiving funds from CDC to produce AIDS education materials
include the following directive:
a. Language . . . to describe dangerous behaviors and explain less
risky practices concerning AIDS should use terms or descriptors
necessary for the target audience to understand the messages.
b. Such terms or descriptions should be those which a reasonable
person would conclude should be understood by a broad cross-
section of educated adults in society, or which when used to
communicate with a specific group, such as homosexual men,
about high risk sexual practices, would be judged by a reasonable
person to be. inoffensive to most educated adults beyond that
group (CDC, 1988b).
OCR for page 380
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OCR for page 382
382 ~ IMPEDIMENTS
As the last sentence notes, the language to be used in AIDS
prevention messages for gay men must be inoffensive to the educated
heterosexual population. This least-common-denominator formula
for providing information on the prevention of a fatal disease would
keep CDC-funded projects from following the committee's recom-
mendations to make -"information available in clear, explicit language
in the idiom of the target audience" (see Chapter 4~. The committee
firmly believes that the grave consequences of HIV infection require
that education messages leave no room for misunderstanding about
risk-associated behaviors. In the face of a deadly threat, conven-
tions about polite or "inoffensive" language should not be allowed!
to impede effective communication about the sexual and drug-using
behaviors that risk transmission of HIV. In this regard, it is instruc-
tive to note the responses of governments outside the United States
to the epidemic. The politically conservative government of Great
Britain, for example, launched a massive, sexually explicit educa-
tional campaign in early 1987. At the time, Britain had fewer than
one tenth the number of AIDS cases as had occurred in the United
States. Similarly, cluring the last three years, countries around the
world have provided their populations with an assortment of explicit
messages on ways to reduce the risk of HIV infection (WorId Health
Organization Special Programme on AIDS, 1988~. For instance, a
Brazilian poster follows many of the recommendations offered by the
committee in Chapter 4. It laudably combines a positive message
with specific information- using the idiom of the people on how
to protect oneself. The slogan "Love doesn't kill" is supplemented
with the following advice: "You can have sexual relations with se-
curity using a latex condom, a rubber. The condom can keep AIDS
away from you, but doesn't keep you away from the one you love."
The following informative announcement comes from the Republic
of Ghana:
You need to know the facts in order to demystify the disease.
AIDS is not a gay disease.
You can be infected just by one contact teach your children so
that their first sexual experience will not be a death sentence.
You cannot detect who is a carrier just by looking at them-
they look just as normal and healthy as you. (World Health
Organization Special Programme on AIDS, 1988)
In contrast to the messages promoted by these governments, the
United States has made what some observers have called slow and
halting movements toward the dissemination of explicit educational
OCR for page 392
392 ~ IMPEDIMENTS
There are many other effects of stigmatization. A problem that
primarily affects a stigmatized group is of little concern to the dom-
inant society; thus, scientific interest, funding priorities, social sup-
port, and legal protections, all of which come from the dominant
society, may not appear until the threat touches the dominant so-
ciety itself. When these elements do appear, they are often overtly
and covertly punitive, in-keeping with the (lominant society's general
attitude toward the group. The stimulus of compassion, usually so
important in rousing a society to help the afflicted, is absent. In
consequence, important public health measures may be undermined,
for the affected persons hide themselves, refraining from action that
might identify them as belonging to the guilty, dangerous group. Fi-
nally, the burden of solving the problem is placed on the stigmatized
themselves; they must change their abode or their habits, or give up
their freedom.
Stigmatization can also distort the stigmatized group's view of
itself (AinTay et al., 1986~. Group members may suffer from a sense of
inadequacy, powerlessness, and unworthiness because these messages
are constantly directed at them by the dominant society. Even when
they are able to acknowledge their risks, they may fee] incapable
of clefending themselves; consequently, vigorous, brave efforts from
within the group are needed for members to break free of these
imputations. Yet while these views prevail, they can deeply affect the
group's ability to stimulate itself to action. In adclition, the genuine
fears that punitive actions will be taken in the name of public health
may limit the group's willingness to cooperate with even reasonable
measures. The phenomenon of stigmatization may inhibit a clear
understanding of an epidemic and rational management of prevention
and treatment programs. In fixing blame on inclividuals, it obscures
the social ant! institutional dimensions so necessary to sound public
health measures. To blame the victim is to absolve social institutions
of their responsibilities.
Stigmatization has other effects as well. Convictions about the
moral inferiority of the stigmatized may undermine confidence in
eclucational interventions and make the dominant groups reluctant
to provide resources for such efforts. Paradoxically, while "volun-
tary behaviors" are condemned, those who exercise them are often
said to be "unable to change." Moreover, the branding involved in
stigmatization can inhibit people from seeking treatment, from be-
ing tested, and from availing themselves of educational ant! support
programs. Empirical ciata needed to track the course of the epidemic
can be Circuit to obtain because the stigmatized hide themselves
OCR for page 393
SOCIAL BARRIERS TO PREVENTION ~ 393
from investigators who, in the view of the stigmatized, represent the
dominant society. Members of the dominant society who themselves
become infected and who can contribute to the spread of disease may
react by psychological clenial or secrecy—to avoid being stigmatized.
In all these ways, the planning and execution of sound public health
measures are hindered. The committee believes it is imperative that
such stigmatization not affect government programs. Whatever effect
stigmatization may have had in the past is not of concern here, but
any present effects it is having must be remedied as soon as they are
discovered.
Stigma and the AIDS Epidemic
The AIDS epidemic has engendered stigmatization since its incep-
tion. The fact that infection has been largely confined to mate
homosexuals and IV drug users has made stigmatization almost in-
evitable, for these groups were already the objects, to a greater or
lesser degree, of the deprecating judgments that constitute stigma-
tization. The AIDS epidemic has adcled to opinions already held
about these groups the new belief that they are dangerous to the
whole society, not only because they exist, are different, or are out-
laws but because they can infect people outside their group with a
lethal disease. Thus, the stigmatization to which these groups have
previously been subject has been reinforced, and one of its primary
effects, the imputation of blame both for being the cause of the epi-
demic ant] for "bringing it on themselves" has become a menacing
cliche.
In this epidemic, the rationale for such stigmatization rests on
the fact that AIDS is transmitted by seemingly voluntary behav-
iors that are widely disapproved of in the broader society. In the
vocabulary of some religions, these behaviors are called "sinful." Ac-
cusers can say to victims, "If you hadn't behaved in this or that
shameful or sinful way, this wouIcln't have happened to you." This
direct attribution of responsibility feeds one of the essential features
of stigmatization: blameworthiness. It allows the society to feel jus-
tified in excluding victims from concern or in banishing them from
the community. One group that is especially prone to stigmatization
is gay men. Figure 7-2 shows the survey responses of national sam-
ples of the American aclult population to questions asking whether
homosexual sex was "always wrong," whether homosexuals should
be allowed to give speeches or teach in colleges, and whether books
advocating homosexuality should be permitted in public libraries.
OCR for page 394
394 ~ IMPEDIMENTS
80
70
60
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30
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Always Wrong
Not Permit
Collece Teacher
-
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Book
1 978
YEAR
1 983
Not Permit
Speech
1 988
FIGURE 7-2 Public opinions about homosexual sex and the civil rights of homosexuals,
1972-1988. Questions included the following:
"1. What about sexual relations between two adults of the same sex—
do you think it is always wrong, almost always wrong, wrong only
sometimes, or not wrong at all?
2. What about a man who admits that he is a homosexual-
a. Suppose this admitted homosexual wanted to make a speech in
your community. Should he be allowed to speak or not?
b. Should such a person be allowed to teach in a college or university,
or not?
c. If some people in your community suggested that a book he
wrote in favor of homosexuality should be taken out of your
public library, would you favor removing this book, or not?"
SOURCE: Tabulated from the General Social Surveys conducted by the National
Opinion Research Center (University of Chicago) (J.A. Davis and Smith, 1988~. See
the caption to Figure 7-1 for details of the survey and tabulation procedures.
The survey data indicated that, throughout 1973-198S, the vast ma-
jority of Americans (70-77 percent) said that homosexual sex was
"always wrong"; in addition, substantial proportions also said they
would forbid! speeches (27-37 percent) and college teaching (39-50
percent) by homosexuals and would remove books favoring homo-
sexuaTity from public libraries (37-45 percent). These data suggest
a source of the conflict that has hampered efforts to combat AIDS,
and they illustrate the particular vulnerability of gay Americans to
stigmatization.
OCR for page 395
SOCIAL BARRIERS TO PREVENTION ~ 395
Legal Status of Homosexual Behaviors
The uneven tolerance found in surveys of public opinion regarding
different types of human sexuality is mirrored in the law. Private
heterosexual behaviors between two consenting adults appear to be
constitutionally protected, even if the man and woman are not mar-
ried. However, as recently as 1986, the Supreme Court ruled that
states could enforce criminal sanctions against consensual homosex-
ual behaviors, even when practiced by adults in the privacy of their
own home (Bowers v. Hardwick, No. 85-140, June 30, 1986~. Al-
though the statutel1 at issue was not limiter! to homosexuals, the
Court's majority hell! that "the only claim properly before the court
[was the] challenge to the statute as applied to consensual homosex-
ual sodomy." Furthermore, in a 5-to-4 decision, it ruled that
(a) The Constitution does not confer a fundamental right upon
homosexuals to engage in sodomy.
(b) Against a background in which many States have criminalized
sodomy and still do, to claim that a right to engage in such con-
duct is "deeply rooted in this Nation's history and tradition" or
"implicit in the concept of ordered liberty" is, at best, facetious.
(c) There should be great resistance to expand the reach of the
Due Process Clauses to cover new fundamental rights.
(d) The fact that homosexual conduct occurs in the privacy of
the home does not affect the result.
(e) Sodomy laws should not be invalidated on the asserted basis
that the majority belief that sodomy is immoral is an inadequate
rationale to support the laws. (478 U.S. at 186)
The four dissenting justices advanced as their first argument in re-
buttal that
the court's almost obsessive focus on homosexual activity is par-
ticularly hard to justify in light of the broad language Georgia
has used. Unlike the Court, the Georgia Legislature has not pro-
ceeded on the assumption that homosexuals are so different from
other citizens that their lives may be controlled in a way that
would not be tolerated if it limited the choices of those other
citizens. (478 U.S. at 200)
In the opinions of the nine U.S. Supreme Court justices, as in the
opinion of the public, there is a cleavage in attitudes toward private
sexual behaviors that depends on the sexual orientation of the par-
ticipants. The Court's decision as recognized in both the minority
iiThe statute (Georgia Code Annotated at 16-6-2, 1984) held that "(a) A person com-
mits the offense of sodomy when he performs or submits to any sexual act involving the
sex organs of one person and the mouth or anus of another.... (b) A person convicted
of the offense of sodomy shall be punished by imprisonment for not less than one nor
more than 20 years...."
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396 ~ IMPEDIMENTS
and majority statements—outlaws behaviors between homosexuals
that would be constitutionally protected if practiced by two hetero-
sexuals.~2
Such animosity toward the sexual behavior of gay men, which is
eviclent in public opinions and laws, has complicated public discus-
sions of the AIDS epidemic and hindered the development of public
policies to curb its spread. Although IV drug users were infected
early in the epidemic and in some locations outnumber gay men
with AIDS, AIDS was initially perceived in the United States as a
"gay disease." This perception has conditioned much of the Amer-
ican reaction to the disease and has called forth the ambivalences
and conflicts that surround American attitudes toward sexuality in
general and homosexuality in particular.
Gays and racial minorities are also threatened from another
quarter. They may fear that the social acceptance and civil rights
they have only recently won ant! tenuously hold may be eroded.
They have had to fight hard to (remonstrate that, because they were
different, they were not clangers to the society at large; now, they
may be seen as ciangers because they may be viewed as "sources"
of a lethal disease. Finally, in this epidemic, not one but several
stigmatized groups are affected. They may share little sympathy
for one another and will often be at pains to distinguish among
themselves. Efforts at education, prevention, and the formation of
policy may be fragmented as a result.
If the AIDS epidemic taxes the health care system as heavily
in the future as is now predicted, the public, already lacking in
12A heterosexual couple joined in the original case, stating that they wished to engage in
the proscribed sexual behaviors but were "chilled and deterred" by the statute and the
arrest of the homosexual plaintiff. A federal district court dismissed their claim, ruling
that "because they had neither sustained nor were in immediate danger of sustaining any
direct injury from the enforcement of the statute," they did not have proper standing
to maintain the action. The federal Court of Appeals affirmed that judgment, and the
heterosexual couple did not challenge the ruling in the Supreme Court. The inability to
apply the Georgia sodomy statute to heterosexuals also caused three of the four dissenters
on the Court to conclude that the "State must assume the burden of justifying a selected
application of its law. Either the persons to whom Georgia seeks to apply its statute do
not have the same interest in 'liberty' that others have, or there must be a reason why
the State may be permitted to apply a generally applicable law to certain persons that it
does not apply to others" (478 U.S. at 218~. Elsewhere in this case, the dissenters noted
that "indeed, the Georgia Attorney General concedes that Georgia's statute would be
unconstitutional if applied to a married couple. See Transcript of Oral Argument, 8,
stating that the application of the statute to a married couple 'would be unconstitutional'
because of the 'right of marital privacy as identified by the Court in Griswold."' The
dissenters go on to state that "paradoxical as it may seem, our prior cases thus establish
that a state may not prohibit sodomy within the sacred precincts of marital bedrooms,
Griswold, 381 U.S. at 485, or, indeed, between unmarried heterosexual adults" (478 U.S.
at 218~.
v ~
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SOCIAL BARRIERS TO PREVENTION ~ 397
sympathy for these groups, may resent that they are (lrawing upon
resources that could be used for "better" purposes—just as many
resent programs meant to help the "unworthy" (as opposed to the
"worthy") poor. Should AIDS become endemic within a group, it
may even appear rational to some people to deny care to its victims
so that they "die out" and no longer make claims on society's scarce
resources.
An immediate concern involves the provision of the one approved
drug (AZT, or zidovudine) that has been shown to be effective in
delaying the progression of disease in individuals who have been
cliagnosed as having AIDS. The use of AZT could claim substantial
financial resources: a year of treatment can cost from $10,000 to
$20,000 per person. Data on the efficacy of AZT in preventing the
progression of disease among asymptomatic infected individuals are
not yet available. However, a senior federal scientist, in response to
questions concerning the use of AZT for early stages of the disease,
was quoter! as saying: "When that happens, we are in for a very
bad day. We don't have enough AZT for a million people, and this
country could not afford to pay for it if we did." i3
Toward Dispelling Stigma
The deeply rooted social pathology of stigmatization is not easy to
dispel. Even when revealed for what it is, the psychological ant] so-
cial mechanisms that support stigmatization may resist eradication.
Rational appeals to unclerstancling are necessary and sometimes use-
ful, but they are often frustrated by forces deeper than reason. It
may be that the dominant group in society must begin to recognize
that the maintenance of stigma has deleterious effects on itself as
well as on those who are stigmatized. In addition to widely shared
humanitarian reasons for helping those at risk of disease, utilitarian
purposes and self-interests are also served by establishing a suitable
social climate for preventive action. In the AIDS epidemic, fears
that the disease would spread from high-risk groups into the general
population stimulated concern and, eventually, the mobilization of
resources, as ShiTts described so forcefully in his 1987 book And the
Band Played On.
The public has thus far repudiated the worst forms of stigmatiz-
ing punishment. Although calls for quarantining all of the infected—
even for branding infected persons have been heard, they have been
i3See M. Specter, "450,000 AIDS Cases Seen by '93; Experts Say Costs Could Bankrupt
Public Hospitals," Washington Post, June 5, 1988:A7.
OCR for page 398
398 ~ IMPEDIMENTS
rejected by voters and policy makers. Protections for confidential-
ity have been erected. However, stigmatization works in subtle and
insidious ways that must be continuously countered. Health pro-
fessionals have a particular responsibility in this regard. They can
counter the growth of stigmatization by the ways in which they define
the disease, label those who are affected by it, serve their needs, and
become their advocates. It has been noted that such professional be-
havior has helpecl in (1estigmatizing several conditions (e.g., leprosy
and epilepsy); similarly, mental retardation anti psychiatric disease
may be on the way to destigmatization as a result of professional
definition and advocacy (Volinn, 1983~.
The media also bear a particular responsibility because the sto-
ries they choose to portray and the language and images they choose
to use may reinforce or counteract stigma. Churches, whose involve-
ment in stigma has historically been great both as objects and
agents can preach an enlightened view and demancl of their adher-
ents sympathy and justice. Educators can devise forms of education
that not only avoid the cliches of stigma but also communicate facts
in frank and fair language. Politicians can shun the temptation to
exploit the epidemic for their own interests.
In general, the American political system, while ostensibly cle-
signed to protect the weak and disadvantaged, is often stymied by the
task of protecting the stigmatized. As noted earlier in this chapter,
stigma often imputes dangerousness to a population and attempts,
in effect if not in name, to outlaw that population. Thus, a politician
who undertakes to advocate for the stigmatized takes on a most un-
popular task: to protect by law the outlaw. Politicians in an elected
system may be hesitant to adopt the unpopular cause; consequently,
the stigmatizes! often live with diminished legal protection.
The law may influence the social process of stigmatization by
prohibiting certain behaviors that are inspired by it. However, this
influence will usually be indirect because the law does not reach the
attitudes that underlie stigmatization (except by educating and mo-
tivating). Stigmatization must be distinguishe<1 from (discrimination:
the former is the valuation of the stigmatized class as dangerous or
undesirable; the latter is the actual behavior and social practices
that place the stigmatize(1 person at a disa(lvantage in society. Anti-
discrimination laws can restrain the behaviors that disclavantage a
social group, but they influence the valuation of that group by the
rest of society only slowly and partially.
The law performs many functions in society. It can constrain anal
punish some behaviors and enable or encourage others. Although the
OCR for page 399
SOCIAL BARRIERS TO PREVENTION ~ 399
primary purpose of law is not education, educational messages can
be communicated to the public by statutes and their enforcement. In
the AIDS epidemic, the law has functioned! in all of these ways. In the
United States, laws have been framed to protect the public against
infection ant! to protect the rights and confidentiality of infected
persons. Efforts to enact the most extreme forms of constraint, such
as quarantine or isolation, have failed; at the same time, the usual
principles of criminal and civil law have been invoked to restrain
harmful behavior by infected persons. Efforts to ensure the privacy
of infected persons have usually succeeded because it is apparent
to legislators and judges that educational programs and care are
inhibiter! by the unwanted exposure of a person's infected! state.
Measures to ensure nondiscrimination in jobs, housing, and health
insurance have taken various forms (Gostin and Curran, 1987; Gostin
and Ziegler, 1987; Dickens, 1988~.
The educational messages conveyed by the law would seem to
be significant influences on behavior. Thus, confidentiality, which is
widely assumed to be necessary to the efficacy of educational pro-
grams leading to behavioral changes, must be upheld and maintained.
Otherwise, the obvious threat of discrimination that attends public
disclosure of infection status would deter individuals from undergo-
ing testing or seeking assistance. Although the precise effects of any
form of legislation are difficult to ascertain, the law must protect
HIV-positive individuals from discrimination. Failure to do so would
not only conflict with the ethical foundation of American society but
wouIc3 also make the epidemic unmanageable.
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Representative terms from entire chapter:
social barriers
