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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

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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~.

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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 announcementsoften 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~.

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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.)

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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).

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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

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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

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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 secrecyto 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.

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394 ~ IMPEDIMENTS 80 70 60 llJ (9 50 a: at 111 CL 40 30 20 10 o - 1 1 1 973 Always Wrong Not Permit Collece Teacher - Remove 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.

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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 statementsoutlaws 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" purposesjust 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.

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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

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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. REFERENCES Aiken, J. H. (1987) Education as prevention. Pp. 90-105 in H. L. Dalton, S. Burris, and the Yale AIDS Law Project, eds., AIDS and the Law. New Haven, Conn.: Yale University Press. Ainlay, S. C., Becker, G., and Coleman, L. M., eds. (1986) The Dilemma of Difference. New York: Plenum Press. Allen, J. R., and Curran, J. W. (1988) Prevention of AIDS and HIV infection: Needs and priorities for epidemiologic research. American Journal of Public Health 78:381-386. Benison, S. (1974) Poliomyelitis and the Rockefeller Institute: Social effects and institutional response. Journal of the History of Medicine 29:74-92. Booth, W. (1987) The odyssey of a brochure on AIDS. Science 237:1410. Brandt, A. M. (1987) No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880, expanded ed. New York: Oxford University Press. Centers for Disease Control (CDC). (1988a) AIDS Surveillance Weekly Report, Novem- ber 14, 1988. Atlanta, Gal: Centers for Disease Control.

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400 ~ IMPEDIMENTS Centers for Disease Control (CDC). (1988b) Content of AIDS-related written materi- als, pictorials, audiovisuals, questionnaires, survey instruments and educational sessions in Centers for Disease Control assistance programs. Federal Register 53:6034-6036. Centers for Disease Control (CDC). (1988c) Guidelines for effective school health education. Morbidity and Mortality Weekly Report 37(Suppl S-2~:1-14. Check, W. A. (1987) Beyond the political model of reporting: Nonspecific symptoms in media communications about AIDS. Reviews of Infectious Diseases 9:987-1000. Cipolla, C. M. (1973) Cristofano and the Plague. London: Collins. Curran, J. W., Jaffe, H. W., Hardy, A. M., Morgan, W. M., Selik, R. M., and Dondero, T. J. (1988) Epidemiology of HIV infection and AIDS in the United States. Science 239:610-616. Davis, J. A., and Smith, T. W. (1988) General Social Surveys, 1972-1988: Cumulative Codebook. Chicago: National Opinion Research Center, University of Chicago. Davis, K., Lillie-Blanton, M., Lyons, B., Mullan, F., Powe, N., and Rowland, D. (1987) Health care for black Americans: The public sector role. Milbank Quarterly 65(Suppl. 1~:213-247. Dickens, B. M. (1988) Legal rights and duties in the AIDS epidemic. Science 239:580-586. Feinberg, H. V. (1988) Education to prevent AIDS: Prospects and obstacles. Science 239:592-596. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, N.J.: Prentice-Hall. Gostin, L., and Curran, W. J. (1987) Legal control measures for AIDS: Reporting requirements, surveillance, quarantine, and regulation of public meeting places. American Journal of Public Health 77:214-218. Gostin, L., and Ziegler, A. (1987) A review of AIDS-related legislative and regulatory policy in the United States. Law, Medicine and Health Care 15:5-16. Guinan, M. E., and Hardy, A. (1987) Epidemiology of AIDS in women in the United States. Journal of the American Medical Association 257:2039-2042. Gussow, Z., and Tracy, G. S. (1970) Stigma and the leprosy phenomenon: The social history of a disease in the nineteenth and twentieth centuries. Bulletin of the History of Medicine 45:425-449. Institute of Medicine/National Academy of Sciences (IOM/NAS). (1986) Confronting AIDS: Directions for Public Health, Health Care, and Research. Washington, D.C.: National Academy Press. Jaynes, J. P., and Williams, R. M., Jr., eds. (In press) A Common Destiny: Blacks and American Society. Report of the Committee on the Status of Black Americans. Washington, D.C.: National Academy Press. Kelsey, J. L., Thompson, W. D., and Evans, A. S. (1986) Methods in Observational Epidemiology. New York: Oxford University Press. Manton, K. G., Patrick, C. H., and Johnson, K. W. (1987) Health differentials between blacks and whites: Recent trends in mortality and morbidity. Milbank Quarterly 65(Suppl. 1~:129-199. McNeil, W. H. (1976) Plagues and Peoples. New York: Doubleday. Moore, K. A., Wenk, D., Hofferth, S. L. (ed)., and Hayes, C. D. (ed.) (1987) Statistical appendix: Trends in adolescent sexual and fertility behaviors. In S. L. Hofferth and C. D. Hayes, eds., Risking the Future: Adolescent Sexuality, Pregnancy, and Childbearing. Vol. 2, Working Papers and Statistical Appendixes. Washington, D.C.: National Academy Press. New York State Department of Health. (1988) AIDS in New York State: Through 1987. Albany: New York State Department of Health.

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SOCIAL BARRIERS TO PREVENTION ~ 401 Presidential Commission on the Human Immunodeficiency Virus Epidemic. (1988) Final Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic. Washington, D.C.: Government Printing Office. Public Health Service. (1987) What You Should Know about AIDS (brochure). Wash- ington, D.C.: Public Health Service. Public Health Service. (1988) Understanding AIDS (brochure). Washington, D.C.: Public Health Service. Rosenberg, C. E. (1962) The Cholera Years. Chicago: University of Chicago Press. Sabatier, R. (1988) Blaming Others: Prejudice, Race, and Worldwide AIDS. Wash- ington, D.C.: The Panos Institute. Shilts, R. (1987) And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin's Press. Itauner, J. J. (1978) The Chinese as medical scapegoats. California History 57:70-84. Tuchmann, B. W. (1978) A Distant Mirror: The Calamitous 14th Century. New York: Knopf. U.S. Department of Education. (1987) AIDS and the Education of Our Children: A Guide for Parents and Teachers. Washington, D.C.: U.S. Department of Education. U.S. Department of Health and Human Services. (1986) Surgeon General's Report on Acquired Immune Deficiency Syndrome. Washington, D.C.: U.S. Department of Health and Human Services. U.S. House of Representatives. (1987) Condom Advertising and AIDS. Hearing Before the Subcommittee on Health and the Environment of the Committee on Energy and Commerce, House of Representatives. Serial No. 100-1. 100th Cong., 1st sess. February 10. U.S. Supreme Court. (1986) Bowers v. Hardwick, No. 85-140, Argued March 31,1986, Decided June 30, 1986. United States Reports 478:186-220. Volinn, T. I. (1983) Health professionals as stigmatizers and destigmatizers of diseases. Social Science Medicine 17:385-393. Winslow, C. E. (1943) The Conquest of Epidemic Disease. Princeton, N.J.: Princeton University Press. World Health Organization Special Progamme on AIDS. (1988) Folio, A Collection of AIDS Health Promotion Materials. Geneva: World Health Organization. Zeluik, M. (1983) Sexual activity among adolescents: Perspective of a decade. Pp. 21-33 in E. R. McAnarney, ea., Premature Adolescent Pregnancy and Parenthood. New York: Grune & Stratton.

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