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Thelen, Andrea Zolnier.
Narrative efforts at social redemption by people with AIDS/HIV
h [electronic resource] /
by Andrea Zolnier Thelen.
[Tampa, Fla] :
b University of South Florida,
ABSTRACT: This dissertation explores four narrative texts written about AIDS/HIV and evaluates each one by applying Kenneth Burke's redemption drama, consisting of guilt, purification, and redemption. The methodology is a close textual analysis using rhetorical analysis as a way to highlight the use of the redemption drama in language. The first chapter explores the history of AIDS/HIV and makes the argument for using Burke's rhetorical approach. The second chapter briefly highlights the plot of the four narratives and provides background information and context for each book. The third chapter applies the concept of guilt to all four narratives. The fourth chapter uses purification, breaking it down into mortification and victimage. Chapter five explains the way each protagonist and reader has found redemption. Chapter six concludes the research and offers limits and possible areas for future study. This research shows that with illnesses that carry a stigma, like HIV/AIDS, those ill often feel the need to defend themselves and their mode of infection to others. Using Burke's redemption drama, an analyst can study language use to show how these individuals defend their medical status to others, and how this allows them to redefine both themselves and their ailments.
Dissertation (Ph.D.)--University of South Florida, 2007.
Includes bibliographical references.
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Adviser: Eric Eisenberg, Ph.D.
t USF Electronic Theses and Dissertations.
Narrative Efforts at Social Redemption by People Wit h AIDS/HIV by Andrea Zolnier Thelen A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Communication College of Arts and Sciences University of South Florida Major Professor: Eric Eisenberg, Ph.D. Elizabeth Bell, Ph.D. Kim Golombisky, Ph.D. Stacy Holman-Jones, Ph.D. Date of Approval: January 19, 2007 Keywords: burke, guilt, purification, rhetoric, illness nar ratives Copyright 2007 Andrea Zolnier Thelen
Dedication This dissertation is dedicated to my father, Stanle y M. Zolnier, who always wanted a doctor in the family.
Acknowledgements I must first thank my committee: Eric, Elizabeth, Kim and Stacy, without whom I would not be here. Thank you for the support, encouragem ent, patience, and guidance you have provided. This work is truly a result of your outs tanding input. I would also like to thank Steven Thelen, who supported me in every way possib le and will always hold that special place in my heart. Kevin, although we have only be en together a short time, I am glad you are in my life and get the chance to share one of the greatest moments of my life with me. Dave and Melanie, you have always been very su pportive and deep down you both knew this time would come, even when I did not! Bu t, there are also the people who listened to me cry, scream, yell and want to quit: Elena, Eric and Wendy, Deb, Laura, Shawn, Joan, Keysha, Shari, Anna, and Lori, all of whom told me to relax and that I could do this. A special thanks to my parents, Dea nna and Buddy, for always reminding me I had to get this done. And of course to Dr. Pa yne, who showed me that Burke does not need to be feared, and who did not strangle me when he might have wanted to. Lastly, to Dennis, who redeemed me not only academi cally, but spiritually as well.
i Table of Contents List of Figures iii Abstract iv Chapter One: History 1 HIV/AIDS: Plague of the 20th Century? 3 Current HIV/AIDS Issues 9 Theoretical Perspectives: Burke and the Redemptio n Drama 12 Methodology 20 Illness Narratives 23 Limitations of Research 2 5 Communication Responses to AIDS/HIV Research 27 Chapter Organization 29 Chapter Two: Background 32 Ryan WhiteÂ’s Story 33 JaniceÂ’s Experience 36 PedroÂ’s Message 38 RogerÂ’s Differing View 40 HIV Not the Cause of AIDS? 42 Chapter Summary 47 Chapter Three: The Need to be Defined as Equal 48 Ryan and his Guilt 52 JaniceÂ’s Anger 63 Pedro and Judd 72 Roger and BobÂ’s Medical Guilt 82 Chapter Summary 91 Chapter Four: Purification through Victimage and M ortification 93 RyanÂ’s Blame 101 JaniceÂ’s Anger 110 Pedro and Judd: Giving and Taking 118 Roger and Bob: Down with the Medical Establishmen t 125 Chapter Summary 133
ii Chapter Five: The Redemption of Self and Others 136 RyanÂ’s End: Normality Achieved 142 Janice: The Desire for Rest 150 Pedro and Judd: Change Through Education 159 Roger and Bob: The Redemption of AIDS 168 Chapter Summary 174 Chapter Six: Concluding Remarks 175 Guilt 178 Purification 180 Redemption 181 Implications, Limits and Future Research 183 References 190 About the Author End Page
iii List of Figures Figure One: Redemption Drama 19
iv Narrative Efforts at Social Redemption by People wi th AIDS/HIV Andrea Zolnier Thelen ABSTRACT This dissertation explores four narrative texts wr itten about AIDS/HIV and evaluates each one by applying Kenneth BurkeÂ’s rede mption drama, consisting of guilt, purification, and redemption. The methodology is a close textual analysis using rhetorical analysis as a way to highlight the use o f the redemption drama in language. The first chapter explores the history of AIDS/HIV and makes the argument for using BurkeÂ’s rhetorical approach. The second chapter br iefly highlights the plot of the four narratives and provides background information and context for each book. The third chapter applies the concept of guilt to all four na rratives. The fourth chapter uses purification, breaking it down into mortification a nd victimage. Chapter five explains the way each protagonist and reader has found redemptio n. Chapter six concludes the research and offers limits and possible areas for f uture study. This research shows that with illnesses that carry a stigma, like HIV/AIDS, those ill often feel the need to defend themselves and their mode of infection to others. Using BurkeÂ’s redemption drama, an analyst can study language use to show how these in dividuals defend their medical status to others, and how this allows them to redefine bot h themselves and their ailments.
1 Chapter One: History I walk down the hall to my new class. It is the fi rst day and I am nervous. I wonder what the upcoming term will bring. Will t his be one of those wonderful, dynamic classes that students love despi te the three-hour time frame? Or, will the course drag on for what feels like an eternity? I pause at the door; the class is quiet, as most stud ents do not know each other. I take a deep breath and walk into the class room. All eyes are on me as I stroll to the front of the room and place m y computer case on the desk. I see confusion in their eyes. They do not know if I am the professor or a student. As I pull out copies of the syllabus one of their questions is answered. I am the professor of NUR 4194: An Inte rdisciplinary Perspective on the HIV Disease. But now, new questi ons form in their minds about my qualifications. I see them evaluatin g me. I am a white, middle class, educated woman who looks young for my age. I doubt they question my teaching credentials. I was hired to t each a college course, so in some manner, I must have the requisite degree s needed for such a position. No, the question on their minds is about my HIV status. I am teaching a course on AIDS/HIV, so am I qualified by personal experience? Once this question is mentally asked, the next is h ow did I become infected if I am indeed positive? It could have been promis cuous sex, IV drugs, or a blood transfusion. This is an important question for them because students want to place me on the hierarchy of AIDS/ HIV blame. If this is something that I did to myself that will impact the way they perceive me. If I became infected through no fault of my own, fr om a blood transfusion, for example, then I am redeemed in their eyes. If I am HIV negative, questions will arise about my experience with AIDS/ HIV, as most of my students are nursing students, and I am not a nurse While I tell them that I am a doctoral student writing about AIDS/HIV, and that a good friend of mine has been HIV positive for over 20 years, I do not answer the burning question about my own status. And I will not answe r this question for weeks. By that time, they will have gotten to know me as a person. Some of them will fear that I have the disease. No long er will it matter how I may have become infected, only if I am. I suspect that even the reader may wonder the very same thing, and I ask you the s ame question I ask my students: Does it matter?
2 The Â“Red DeathÂ” had long devastated the country. No pestilence had ever been so fatal, or so hideous. Blood was its Avatar and its seal-the redness and the horror of blood. The scarlet stains upon th e body and especially upon the face of the victim, were the pest ban whic h shut him out from the aid and from the sympathy of his fellow men. Â–Edgar Allan Poe, The Masque of the Red Death Edgar Allen Poe was describing the pestilence of hi s time, tuberculosis. It was commonly called the Red Death because it left the f ace of its victims red and flushed. However, if PoeÂ’s original reference was unknown, o ne might have thought that the pestilence being described was AIDS, a disease that has been called the plague of the 20thcentury (Garrett, 1994). According to the World He alth Organization, there have been three million deaths attributed to AIDS since 1981, and forty million people are either living with HIV or have AIDS. In 2003 (the last ti me figures were compiled) five million people learned they were HIV positive (CDC, 2004). AIDS/HIV is especially prevalent among minorities, as African Americans are ten time s more likelyÂ—and Latinos four times more likelyÂ—than whites to become infected wi th AIDS/HIV (Stine, 2002). And while in the past decade the numbers of new infecti ons have leveled off, recent reports from the Centers for Disease Control and Prevention (CDC) suggest that young gay males are seeing an increase in seroconversions, or becoming HIV positive (Tampa Tribune, 2003). Unfortunately many young people ha ve come to believe that the protease cocktails used to treat the opportunistic infections associated with AIDS are a cure, which they are not. They mistakenly believe that even if they should become
3 infected, with current medications the virus can re liably be made chronic instead of terminal (Stine, 2002). These statistics show that while AIDS/HIV might not be at the forefront of media reports as it was during the eig hties and early nineties, it is still very much an issue and continues to impact millions of l ives. In addition, despite decades of AIDS education, the re are still some who blame the patient for his/her infection. In order to add ress this issue of blame, people with AIDS/HIV and their loved ones often feel the need t o explain their lives and mode of infection as a way to defend themselves against thi s Â“patient-at-faultÂ” image. The purpose of this dissertation is to explore narrativ es written by those who are HIV positive and/or their loved ones and investigate the rhetori cal techniques they used to redeem themselves in the eyes of others. This chapter will briefly explore the history of AIDS in terms of both medical and psychosocial implications introduce a justification and rationale for the study of AIDS/HIV narratives, and explain Kenneth BurkeÂ’s model of redemption rhetoric as a useful way to analyze thes e stories. AIDS/HIV: The Plague of the 20th Century? In Los Angeles in April of 1981, Dr. Joseph Gott lieb treated five gay male patients suffering from thrush, which is the same s train of yeast that causes a common gynecological infection in women1. What was unusual was that these men had this bacterium in the mouth and esophagus. Doubly puzz ling to the doctor was the fact that thrush is not usually seen in young, healthy men, b ut in people whose immune systems are compromised, such as the elderly or those recei ving chemotherapy treatments for cancer (Hooper, 1999). By May of that year, two o f these men died of PCP, a normally 1 For an extended history of AIDS and HIV, please s ee Alcamo (2003); Garrett (1994) chapter 11; Grmek (1990); Mann (1992, 1996); and Shilts (1988).
4 harmless bacterium found in the lungs of healthy pe ople (Langone, 1991). On June 5 1981, the first article appeared about these strang e ailments infecting gay men.2 Due to the word Â“homosexualÂ” in the articleÂ’s title, the o nly publication that would carry the medical information was the CDCÂ’s weekly newsletter Morbidity and Mortality Weekly Report (MMWR) (Hooper, 1999). This article was quite pos sibly the first ever written about AIDS, and it depicted this disease as affecti ng only gay men. 3By the following year, speculation began that the d isease had a broader reach, despite its earlier name: Gay Related Immune Defici ency Syndrome or GRIDS. Heroin addicts, hemophiliacs, and Haitians (also known as the 4HÂ’s) were also beginning to exhibit signs of compromised immune systems (Sabati er, 1988)4. At this point it became evident that this was no longer solely a gay diseas e, and the name was officially changed from GRIDS to AIDS: Acquired Immune Deficiency Syn drome. However, the connotation that AIDS was a gay disease caused by d eviant sexual practices remained strong in the minds of many Americans and Europeans After years of research, it was concluded that the Human Immunodeficiency Virus (HIV) was the underlying cause of AIDS. Peop le could now be tested to find out if 2 These same gay man also claimed to use nitrate in halants, called poppers, before having sex. Poppers would allow the men to have extra energy fo r either dancing all night or multiple sexual escap ades and were at one time thought to lower the resistanc e of the immune system (Garrett, 1994). 3 While the disease was first noticed In Los Angeles after reading the CDCÂ’s MMRW, physicians in both New York and San Francisco also found cases of otherwise healthy homosexual men with thrush, PCP, Kaposi Sarcoma (KS) and other infections that are typically only found in individuals with a suppressed immune system. These healthy men were d ying of a bacterium, which was normally harmless in the human body. The gay community had labeled t his new ailment gay cancer, but the medical establishment had taken to calling it Gay Related I mmune Deficiency (GRIDS). By the end of 1981, over 40 gay men had become gravely ill and died (Hooper, 1999). 4 When the initial groups began to show symptoms of AIDS/HIV, the CDC called this grouping the 4 HÂ’s, including Haitians. This label was late r removed because being from one area did not const itute a at risk behavior.
5 they were anti-body positive for the virus (Shilts, 1987)5. In addition, the national blood supply could also be tested for HIV in the blood us ed for transfusions (Garrett, 1994). Once the cause was known to be a virus, the CDC det ermined that there were a few modes of transmission: unprotected sex, either het erosexual or homosexual, blood transfusions, needle sticks, and reused intravenous (IV) drug needles (Garrett, 1994; Grmek, 1990; Hooper, 1999; Langone, 1991; Paine, 19 88; Shilts, 1987; Stine, 2002). Reviewing the aforementioned ways of transmitting t he virus, one notes that individuals who engaged in these practices are not representati ve of the population at large (Sabatier, 1988). Largely because of who comprised the groups of early infections (e.g. homosexual men, drugs users, prostitutes and a few hemophiliacs) people who had AIDS or HIV were stigmatized, or considered societal dev iants.6Since this disease was first discovered in gay men and then in IV drug users, the general public and the American Government were not concerned about the epidemic (Garrett, 1994; Shilts, 1987). President Reagan ha d already been in office for seven years before he said the words HIV or AIDS in public (Gar rett, 1994; Stine 2002). By the time Reagan addressed the issue, 36,058 Americans were d iagnosed with HIV, and 20,849 had died (Shilts, 1987). Many wonder why the governme nt turned its back on these Americans. Under the Reagan Administration, homosex uality and drug use were seen as sinful and unacceptable. Also, President Reagan wa s funding a cold war with Russia, using funds from government agencies like the CDC, and did not appear to want to 5 There is a group who call themselves the AIDS diss idents, and they do not believe that HIV is the virus that leads to AIDS. This group is compri sed of scholars, researchers and prominent doctors. While this is not the focus of the paper, one shoul d look at the research in chapter 2 for more inform ation. 6 Earlier it was mentioned that Haitians were also a t one point considered a risk group, as the numbers of Haitians with HIV was very high. This l abel was later dropped by the CDC because being from a certain racial group did not mean that you w ere more or less likely to become infected, rather it had to do with certain behaviors (Grmek, 1990; Sabatier 1988).
6 reallocate funds for what was thought of as a gay c ancer or gay plague (Garrett, 1994).7 Whatever caused the hesitation on the part of the R eagan Administration, legions of people were dying. But where did the virus come from? To date, there is no conclusive answer.8 What is known is that AIDS can lead to a horrible d eath (Garrett, 1994; Mann, Tarantola and Netter, 1992, 1996). Perhaps because of its un known origins, and the way that its victims seem to wither away to nothing, some people have an exaggerated fear of acquiring this virus. Some Americans still believe that one can become infected by sharing silverware or toilets with those who are po sitive (Stine, 2002). Others feel that it can be transmitted by mosquitoes, and some think th at the virus can be transmitted through the air (Stine, 2002). In fact, scientists have found that the virus is very weak and can only survive in certain environments. The virus cannot live outside the body for more than a few minutes, and if one does come into contact with the virus, soap and water can rinse the virus away (CDC, 2002). Howeve r, an open wound exposed to an infected personÂ’s blood can lead to infection. The most common method of transmission is unprotected anal sex, as the penis will often ri p the lining of the anus, causing it to bleed, thereby allowing the virus direct access int o the bloodstream (Grmek, 1990). 7 It has been suggested that one possible reason for this lack of immediate attention might have been attributed to the fiasco that occurred with th e fear of swine flu, where medical doctors persuade d the government to fund a vaccine because they felt a di sastrous outbreak was imminent. People were vaccinated, the swine flu epidemic never happened, but the vaccine produced horrible side effects and the government was sued for millions (Garrett, 1994). 8 There are some theories that exist as to origin of the virus. This disease is a punishment from God for certain sinful lifestyles. Another suggest s that Aliens brought it from another planet. A p opular theory is that Africans become exposed through cont act with infected simians. Some have suggested tha t a small, segregated tribe in Africa lived in peace wi th the virus until they were exposed others who did not have immunity to it. Hooper (1999) has researched the idea that a tainted batch of polio vaccine infe cted thousands of Africans. And some truly do think the CIA created this virus to rid the planet of those some consider undesirable. The truth is that there is n o definitive answer to what the origin of this viru s is or could be.
7 Also, reusing hypodermic needles containing contami nated blood allows for an easy mode of transmission (Stine, 2002). The virus need s to have direct access to bodily fluids and cannot survive long in an environment wi thout them. There has also been public speculation about which bodily fluids contain the virus. According to the CDC (2004), the virus has been found in blood, semen, vaginal secretions, breast milk, and saliva. All of these modes can transmit the virus, but some better than others. For example, many used to worr y about kissing an HIV positive person, but scientists have found that the amount o f HIV in saliva is not enough to cause infection, unless an enormous amount is ingested (S tine, 2002). Mothers can pass the virus along to their babies, but if one does not br east feed and gives birth via Cesarean, the chances are only about 5 percent that the baby will remain HIV positive once it sheds its motherÂ’s antibodies (Stine, 2002). Whatever the origins of the virus, the statistics r emain frightening. Some attempt to assuage their fears by blaming others or by pret ending that it will never affect them, but the reality is that AIDS/HIV impacts people of every ethnicity, gender and socioeconomic class. Sadly, media reports do not often represent the diversity of those infected. Of new infections among men in the Unite d States, the CDC estimates that approximately 60 percent of men were infected throu gh homosexual sex, 25 percent through intravenous drug use, and 15 percent throug h heterosexual sex. Of newly infected men, approximately 50 percent are black, 3 0 percent are white, 20 percent are Hispanic, and small percentages are members of othe r racial/ethnic groups. Fifty nine percent of these infections occurred in men between the ages of 25-40. Of new infections among women in the United States, the CD C estimates that approximately 75
8 percent of women were infected through heterosexual sex and 25 percent through injection drug use. African American women represe nt the majority of new female AIDS cases, as their numbers are 19 times higher than th ose of white women and five times higher than those of Hispanic women in thirty two s tates with stable AIDS/HIV reporting. In general, African Americans suffer t he majority of deaths caused by AIDS, accounting for more than half of all U.S. AIDS-rela ted deaths in 2003 (CDC, 2004). These statistics are appalling, but the devastation in Africa is even worse. In America, AIDS/HIV is still thought of as a gay and drug user disease; in Africa it is mainly a heterosexual issue. Recent trends reporte d by the Joint United Nations Programme on AIDS/HIV (UNAIDS) suggest that in subSaharan Africa, 75 percent of women between the ages of 15-24 are infected with H IV (2006). The total number of both men and women infected in this part of Africa is over 6.5 million (2006). Many wonder why AIDS education is not working in this pa rt of the world. There is no simple answer to this question. One suggestion is that so me African cultures permit men to sleep with women outside of the marriage, but wives cannot ask their husbands to use condoms. In addition, some were infected early on in the epidemic via reused and nonsterile needles, which led to a fear of the Â“white manÂ’s medicinesÂ” (Garrett, 1994). When outside doctors came to educate about AIDS, many in small villages were suspicious of the information, politely took the condoms and list ened, but did not act upon the information provided (Mann, Tarantola, & Netter, 19 96). Sadly, more current research suggests this rejection of condom use is still prev alent today (CDC, 2004). Many people in Africa have other issues to deal with such as po verty, hunger, and malnutrition;
9 therefore, AIDS is not high on their list of worrie s or priorities. This makes AIDS education in Africa a challenge. Current AIDS/HIV Issues It has been over 20 years since the discovery of th e first US case of AIDS. In that time we have learned a great deal about the virus, the scientific community, and ourselves. While it may be that adversity brings o ut the best in people, fear brings out the worst. Many people infected early on were treated poorly: nurses did not want to touch patients who were positive, the police would wear g loves while touching a heroin addict or a gay male, and even our own president did not a dmit to the existence of the virus until six years after it emerged in California. While on e would like to think that people are more informed and progressive than 20 years ago, St ine (2002) explains that this is not likely the case: One in five Americans (22%) still believes that sha ring a drinking glass can transmit HIV or is not sure about the risk of this activity. 16% believe that touching a toilet seat can or might transmit HIV. More than half (58%) did not know that having another sexually transmitted infec tion, such as herpes, increases the risk of HIV infection. Less than half (43%) ar e aware of available treatment to prevent mother-to-child transmission. The major ity of Americans (84%) believe that people with HIV and AIDS still face so me or a lot of prejudice and discrimination because the preconception is that th is is a gay disease. One third (33%) of Americans are concerned that others would think less of them if it were known that they had been tested, but 43% do admit t o being tested. More than
10 one in four Americans (28%) says they would be unco mfortable working with someone who has HIV or AIDS. (p. 430) These misconceptions about AIDS/HIV are not easily corrected by exposing people to more medical information and statistics. This gap between research and reality leaves many AIDS/HIV patients without information. Where can people go to learn from others who have lived with the virus? One could re fer to the basic historical information, such as that presented above, but this is only the medical and statistical side of the virus. The alternative to medical and historical research is to look at HIV patient narratives, life stories that might provide what Burke (1973) calls Â“equipment for living.Â” These narratives, written by people who are positive or k now or love (ed) someone positive, are real accounts of individuals living and dying with this disease. These authors know what it is like to wake up every day and live with AIDS/ HIV. In addition, they also know that regardless of how they became infected, they are no t to blame for their situations. They provide real life examples of how the virus is tran smitted and to whom. Narratives about AIDS/HIV are one useful way for sharing knowledge a nd educating the reader about the identity of those living with AIDS/HIV. There is a sense of mystery surrounding this virus and with that comes the tendency of the public to blame AIDS/HIV patients f or their own infections. Inaccurately, people label many HIV positive people and those with AIDS as having a flaw in character, and are therefore likely guilty of some indiscretion, which led to their infections. The authors of AIDS/HIV narratives see k to promote a better understanding of people with AIDS/HIV and challenge certain preco nceived stereotypes. The authors of these texts try to establish some common ground with the reader to show that this
11 disease can happen to anyone and that they had done nothing wrong to deserve their fates. The idea that people who are infected with HIV are to blame for their status leads to the following research question: RQ: How do people with AIDS/HIV use the narrative format to pursue redemption from blame? The nature of AIDS/HIV encourages feelings of fear among those who are not infected, leading to scapegoating, or blaming of the victim. In order to deal with this guilt, the authors of some AIDS/HIV narratives seek to challen ge this notion of blame with a rhetoric of identification and redemption. BurkeÂ’s work on the cycle of guilt, purification, and redemption allow for an analysis of the language used in these narratives. The redemption drama provides the tool s that will show where the guilt is present in the language and how that guilt needs to be addressed and remedied through purification to ultimately attempt to reach a momen tary form of redemption Â….the reason to believe that, while the era of temp oral dominion continues, the cycle of terms implicit in the idea of worldly orde r continues, forever circling back upon itself, thus forever Â“guiltyÂ”, thus forev er demanding Â“redemptionÂ”, thus forever incident anew to the search for a cura tive victim. For it seems that, even if one believes in the idea of a perfect, supe rnatural, superpersonal victim, by identification with whose voluntary sacrifice one c an be eternally saved, there is still the goad to look for victims here on earth as well, who should be punished for their part, real or imaginary, in blocking the beli everÂ’s path to felicity or perhaps in threatening to send him on his heavenly way too soon. (Burke, 1970, p. 223)
12 This dissertation will explore how these narrative s attempt to reach redemption, and examine whether or not such attempts are successful by looking at the ways in which guilt, purification, and redemption are used to red efine AIDS and those who suffer from it. In the section that follows, the concepts of i dentification and redemption will be explained in more detail.Theoretical Perspective: Burke and the Redemption Drama Kenneth Burke (1966, 1968, 1969a, 1969b, 1970, 1973 1984a, 1984b) argued that rhetoric provides humans with the information and guidance they need to live and function in society. As such, rhetoric has the ab ility to make people feel valuable, needed, and part of something greater than themselv es. In addition, Burke adds that rhetoric is also a Â“strategy for encompassing a sit uationÂ” (1973, p.109), which means that situations are defined and reacted to based upon th e language we use to describe them. Rhetoric is a tool that may be used for unification and the concept of identification allows for people to see their similarities. Perso ns can be unique and still have common characteristics with one another. As such, it is p ossible to identify with others while retaining a separate identity. For Burke, identification and persuasion are not in terchangeable. Rather Â“we might well keep it in mind that a speaker persuades an audience by the use of stylistic identifications; his act of persuasion may be for t he purpose of causing the audience to identify itself with the speakerÂ’s interests; and t he speaker draws on identification of interests to establish rapport between himself and the audienceÂ” (Burke, 1969, p. 46). Identification creates unity, and rhetoric can prom ote this union. However, as mentioned above, people are unique beings, and these unique q ualities are what Burke (1969) calls
13 substances. It is through the unification of these substances, or qualities, that two or more people become consubstantial, or identified with on e another. This consubstantiality can lead to an attitude change as the language used by the speaker will likely highlight the commonalities between speaker and audience, thus cr eating the impression of unity and similarity( i.e. identification) (Burke, 1969). For Burke (1969), the need for identification origi nates in our perception of division. Â“Identification is, by the same token, t hough roundabout, to confront the implications of divisionÂ” (Burke, 1969b, p 22.). If people did not feel divi ded, there would be no need for rhetoric to provide a common l anguage that attempts to make people feel unified on an issue. Burke states, Â“if men were not apart from one another, there would be no need for the rhetorician to procl aim their unity. If men were wholly and truly of one substance, absolute communication would be of manÂ’s very essence. In pure identification, there would be no strife,Â” (19 69b, p. 22). If everyone felt the same way about things, there would not be a need for som eone to explain why we should all agree or disagree. Since many people have differen t views and ideas, however, at times a rhetorician is needed to stress the possibility of a unified body. Burke (1969) asserts that identification works in t hree ways. The first is identification as an end in and of itself. Â“A pres idential candidate may tell a group of farmers that she was raised on a farm. If she can convince the farmers that they thus share substance, she may win their votes. In these cases, Â‘insofar as their interests are joined, A is identified with BÂ’ and persuasion concerning a desired end occ urs,Â” (Burke, 1969b, p. 20). In this case, the goal is persuasio n.
14 The second type of identification involves antithes is, or identification based on a common enemy. For example, two people may violentl y disagree on a topic, but find they come together when a common concern is threate ned. The idea behind antithesis is that people on opposing sides may join together and suppress their differences for a short time, based on the unified focus of a common intere st or foe. The third type of identification is perhaps the mos t subversive and persuasive because it is covert and occurs at the subconscious level. The example that Burke (1969b) uses deals with war, and how we Â“identifyÂ” with soldiers when discussing war. Despite the fact that the person in question is not a solider, he/she identifies with that soldier by using Â“weÂ” to imply that everyone is inv olved in the war effort. This is what Burke means when he states that we become co-substa ntial with others when identification occurs. Subconsciously, the speaker has formed a relationship with someone he/she did not know based on a feeling of b eing unified for a cause, such as fighting a war. As shown above, identification is more than relatin g to another. It also involves the ways in which people use language to bridge the ir dissimilarities to reach common ground. Divisions in the social order create drama that can be explored via BurkeÂ’s (1966, 1984b) concepts of guilt (pollution), purifi cation, and redemption. By blaming another group for something, people may be united t hrough that act of scapegoating a common enemy. This unification, which is what happ ens when identification has been successfully achieved, also provides the group with a common language to describe the ostracized other (Brock, 1998; Gusfield, 1989; Hart 1990).
15 BurkeÂ’s (1966) redemption is based on the idea of d rama, and he defines drama by action and conflict. If action is to be our key term, then drama ; for drama is the cumulative form of actionÂ…but if drama then conflict And if conflict then victimage Dramatism is always on the edge of this vexing problem, that com es to a culmination in tragedy, the song of the scapegoat. (Burke, 1966, p 54, original emphasis) When life is defined as a drama, it suggests that l ife is lived through actions, and not ideas. These actions lead people to behave in cert ain ways and make certain choices, with the idea that there will be conflict resolutio n. The people in the drama are not characters in a play, but characters trying to crea te change and deal with uncertainty. Drama is about agents making choices. This is all done through the use of language and how these issues, uncertainties and fears are dealt with becomes the performance. Since Burke (1966) argues that life is about division and is a personÂ’s attempt to deal with the guilt caused by such alienation, the redemption dra ma is a way to work through, using language, the guilt and purification to reach the a ct of redemption. BurkeÂ’s (1966) notion of redemption is much like th e idea of sin in Christian rhetoric; whereby, someone must atone for a sin tha t has been committed. Bobbitt (2004) explains that BurkeÂ’s notion of the redemption dram a is not found in any one body of his work, but rather can be seen throughout his many pu blications. However, many others have compiled and organized this theory and explain in detail how one can use it for the purpose of rhetorical criticism (Brock, Scott, and Chesebro, 1990; Foss, Foss and Trapp, 2002; Rybacki and Rybacki, 1991; Scheibel, 2002, 19 99, 1995). The concept of redemption begins when a person or g roup rejects a hierarchy,
16 which produces feelings of guilt that must be addre ssed (Burke 1984b, 1970). Rejection of a hierarchy implies that a person has done somet hing wrong, be it an internal or external feeling of failure, and this causes that i ndividual to feel guilt. BurkeÂ’s (1970) poem about redemption sets up the process: Here are the steps In the Iron Law of History That welds Order and Sacrifice: Order leads to Guilt (for who can keep commandments!) Guilt needs Redemption (for who would not be cleansed!) Redemption needs Redeemer (which is to say, a Victim!) Order Through Guilt To Victimage (hence the Cult of the Kill)Â…..( p. 4-5) These feelings of guilt are communicated through la nguage and word choice and an analysis of such language allows the rhetorician to rewind and determine the initial cause of the guilt (Scheibel, 1995). For the perso n who feels guilty, he or she must then find a way to counteract this perceived fault. Th us, when one feels he/she violated a hierarchy, that person feels guilt. This person mu st then reclaim his/her status on the social hierarchy. One way to make someone feel les s guilty is to find another and place him or her below oneÂ’s self on the hierarchy in que stion. This is called purification; whereby, another can be symbolically held accountab le for oneÂ’s own feelings of guilt; this is also known as scapegoating or victimage. I nternalizing the feelings of responsibility for a certain action is termed morti fication.
17 In order to resolve this feeling of guilt, one must Â“make a symbolic offering to appease society and restore balance to the social o rder,Â” (Rybacki and Rybacki, 1991, p. 72). This means either the person who has been acc used of being wrong must admit to his/her guilt or someone else must take personal re sponsibility and blame him or herself. Thus, a scapegoat is named. As such, a ritualized act of victimization or mortification needs to occur (Burke, 1969a). Victimage means tha t others publicly place blame on someone else; whereas, mortification is when one ac cepts the blame for some deed to appease others (1966). For example, Mackey-Kallis and Hahn (1994) wrote about the type of scapegoating that occurred during the war o n drugs. They found that Americans were happy to blame the drug lords for the drug pro blem in America, and not the people buying the drugs. By blaming those bringing drugs into the country, Americans could find an external scapegoat, and not have to look in ward at drug use at home. Many viewed drug use as bad and, therefore, users were l ow on the social hierarchy, but dealers could be placed even lower. This belief may have cr eated a feeling of unity among Americans, as they were rhetorically and symbolical ly fighting a war against the evil drug lords wanting to corrupt good Americans ( Mackey-Ka llis and Hahn, 1994). This allowed many to purge their own guilt about not being able to stop drug use and sales in this country. Another way to purge our guilt about breaking the s ocial order or hierarchy is through mortification, or Â“self-inflicted punishmen t, self-sacrifice, or self-imposed denials and restrictions designed to slay characteristics, impulses or aspects of the selfÂ” (Foss, Foss, and Trapp, 1991, p. 197). For example, Bobbi tt (2004) describes how Martin Luther King, Jr. spent much time delivering speeches for t he civil rights movement, thereby not
18 being at home with his family and putting all their lives at risk for the unification of the country. In addition, it could be said that King a lso made the greatest sacrifice: shot preaching unity between blacks and whites in the 19 60Â’s, King willingly sacrificed his life to spread his message. KingÂ’s decision to give up his personal life to forward his cause for civil rights is a critical example of mortifica tion, as he sacrificed something important in his life for the betterment of others. Mortific ation implies that one is sacrificing something important for something else that is impo rtant in a different way. Finally, after the guilt has been addressed and the person has been redefined as either not to blame or has accepted blame, then he/ she must be redeemed. This can be accomplished by Â“a change in identity, a new perspe ctive, or a feeling of moving forward toward a goal or a better life in generalÂ” (Foss, F oss and Trapp, 2002, p. 211). This catharsis can be found in many forms, but it needs to be a type of closure that addresses the initial guilt that started the need for redempt ion in the first place. The redemption drama, which begins with feelings of guilt stemming from issues of hierarchy, requires that purification occurs either by blaming oneself (mortification) or another (victimage), so that a redemption or catharsis can take place. Figure one below shows a breakdown of the redemption drama into its three main parts. Th is drama is enacted through the use of language, because all language is rich in hierarchy and thus a new language needs to emerge that addresses the initial hierarchy and pro vides a new perspective. Burke (1966) believes that because language is filled with Â“thou gh shall notsÂ” many feel guilt when they enact one of these Â“shall nots,Â” and that is how we can find where the guilt first occurred, setting off the need for redemption.
19 Figure One: Redemption Drama This concept of redemption has been used to look at many different forms of rhetoric. Burke (1973) himself used the concept of the scapegoat in Â“The Rhetoric of HitlerÂ’s BattleÂ”. In addition, Brummett (1981) exp lored scapegoating, mortification, and transcendence in presidential campaigns. The conce pt of hierarchy and victimage was used to look at allegations of witchcraft in Africa (Westerfelhaus and Ciekawy, 1998). Scheibel (2002) has even used this redemption model to analyze the narrative of a guitar repairman. In addition he has explored how it can be used to explain the myth associated with the death of a roommate in college (1994) and the hierarchy present in surfer rhetoric (1995). However, neither AIDS nor illness narrativ es have been rhetorically analyzed in terms of pollution, purification and redemption. To understand why people with AIDS write their sto ries and share them with others, we must understand the hierarchy of AIDS (w hich is created by the propensity to blame the victim) and how we can change this view o f a disease that ultimately will kill most of its victims. What is meant by the idea of w ritten stories is an exploration of not only becoming infected, but progressing to AIDS and dealing with the ailments, as well as both the physical and social issues that accompany such a diagnosis. This drama is a Redemption drama Guilt Purification Mortification (self sacrifice) Victimage (sacrifice of other) Redemption
20 valuable method for illuminating the rhetorical dim ensions of AIDS/HIV narratives. One must remember that AIDS/HIV is unique in that it is a sexually transmitted disease that kills. Most of the victims are blamed for their ow n conditions, which is unusual for most other terminal illnesses. These infected people mu st find a way to recontextualize what it means to be HIV positive or to have AIDS. They mu st find a way to redeem their position on the social hierarchy of illness and bla me and remind others that regardless of how they became infected, they are still classified as terminal patients. By using BurkeÂ’s drama of redemption, this study wi ll look at the AIDS hierarchy, the idea that the patient is at fault fo r his/her own medical condition, and the way that guilt is addressed by the author to challe nge the notion of blaming the patient for the ailment. In addition, the ways in which each a uthor attempts to lift the stigma of this disease and how each addresses the notion of being scapegoated by those who blame will be highlighted. Lastly, this study investigates ho w the authors redeem themselves and their audiences by changing the view of AIDS patien ts and what it means to live and die with it. All of this will be done by analyzing the language of identification used to bring about the redemption of people with AIDS/HIV. A dr amatistic redemptive approach sees AIDS/HIV in terms of people making choices (action) rather than as viruses attacking cells (motion). Methodology The focus of this research is not to conduct a tra ditional ethnography, in which a researcher investigates a certain site from a dista nce and reports his/her findings. This is also not an auto-ethnography, in which the research er communicates about his/her own feelings about a specific research site. Rather, t his is a rhetorical analysis of already
21 published accounts written by those who are either HIV positive, or have loved someone who was HIV positive or had AIDS. A rhetorical anal ysis suggests that one will be analyzing the language of a text and making argumen ts as to what this language states about the phenomena in question. In this particula r instance, the rhetoric is found in the form of narratives about lived experiences with AID S/HIV. The redemption drama as a rhetorical tool, outlined above, works well with th ese types of publications because the true motives of the authors cannot be known, but an analysis of the language and the word choices made can help one to investigate why t he authors felt the need to defend their situations by writing a book about their live s with AIDS/HIV. The narratives chosen are about AIDS/HIV, and focus on life with the illness. For example, Greg Louganis, the Olympic diver, is someo ne well known for his HIV status, but his book only addressed this issue in one brief chapter, and therefore did not have enough information to be considered (Louganis & Mar cus, 1995). Arthur Ashe was a tennis player who contracted the virus via a blood transfusion, but his book was more of an autobiography of his life, with only a fraction being about living with AIDS (Ashe and Rampersad, 1993). There are many anthologies of n arratives written by those who are HIV positive. Rudd and Taylor (1992), for example, have edited a book about women who are HIV positive, but the stories in this book are short and not sufficiently detailed and, thus, were excluded from this study. Maggiore (2000) has written a small text on the dissident view of AIDS/HIV, and while she does include narratives at the end, they are also not detailed enough for this study. Many are familiar with Randy ShiltsÂ’ (1988) narrative entitled And the Band Played On but this is more a historical view of the virus from the early days rather than one personÂ’s story about AIDS/HIV. Thus, the four texts
22 chosen focus on life and death with the virus. Eac h had to be detailed and descriptive about life with AIDS/HIV, and each had to represent one of the main groups impacted by AIDS/HIV: Hemophiliacs via tainted blood, heterose xual women via sex, gay men via sex, and heroin users via shared needles. These ar e the four narratives that are used in this research. In addition to meeting the criteria listed above, t hese narratives had to employ certain rhetorical strategies of identification and redemption as proposed by Burke, to argue that anyone could become infected, that this was not a disease only of Â“deviants.Â” Based on these certain rhetorical strategies, this research focuses on explaining how and why these texts are acts of redemption and why AIDS and HIV should be seen as no different than any other illness. The goal is to u nderstand that while these protagonists may be infected with AIDS/HIV, they are not to blam e for their condition. The four narratives chosen for this analysis had to be available to a mass audience, and therefore found in libraries, booksto res, and online book houses. A broad search under AIDS/HIV will yield these books. All were rated by Amazon.com and Barnesandnoble.com readers as being audience favori tes with five stars each under the recommendation column by at least fifteen readers. These favorable reviews suggest that their messages are easy to understand, and that som e readers could identify with the authors of these books. Each one of these narratives represents protagonist s having to make choices about their lives. An option would have been to let the infection run its course and die. None of these writers selected this option, and therefor e these narratives represent one view of what happens when an individual becomes ill with a disease that carries with it a moral
23 and societal stigma. These stories show how a life narrative changes with a diagnosis of AIDS/HIV and how that new life narrative must be al tered to accommodate an identity of one infected with not simply an illness, but one th at carries with it a great deal of fear and blame. These four narratives represent struggles t o make sense of this new life and identity, and they do so with great detail. They a re all shocking because each one represents an outlier, an exception, to the predomi nate groups who become infected. Illness Narratives The stories people tell to account for dis-ease in both their minds and bodies are called illness narratives. To understand this type of narrative format, one must understand what differentiates an illness narrative from more traditional narratives. Frank (1991, 1995) has written about his own illnes ses, reporting on his experience with both cancer and a heart attack. Due to his experie nce, Frank (1991) tells us that there is a difference between illness and disease: Disease terms include measures of body temperature, the presence or absence of infections, the circulation and composition of bloo d and other fluids, the texture of skin, and so on and on. Illness is the experien ce of living through the disease. If disease talk measures the body, illness talk tel ls of the fear and frustration of being inside a body that is breaking down. Illness begins where medicine leaves off, where I recognize what is happening to my body is not some set of measures. What happens to my body is my life. (p. 12-13) Thus, an illness narrative chronicles the way that an illness impacts the everyday life of an individual.
24 Kleinman (1988) also has a definition of what const itutes an illness narrative. He states that illness is how a patient and those surr ounding that patient deal with and respond to being ill. Kleinman (1988) also separat es out disease from illness. Disease from his view is what the doctor or practitioner se es when he/she observes a person who is ill. It is a biological reaction to something g oing wrong with the body. Based on KleinmanÂ’s view, an illness narrative is the tellin g of the experience of being sick, focusing more on the social symptoms than the biol ogical ones. These stories are shared not to show expertise, but rather to share experience and make sense of oneÂ’s predicament (Frank 1991). Fran k also argues that illness allows a re-evaluation of life and creates a new focus on bo th what the ill person can learn and how that person can help others (1995). What makes an illness story is the act of witness t hat says, implicitly or explicitly, Â‘I will tell you not what you want to hear, but wha t I know to be true because I have lived it. This truth will trouble you, but in the end, you cannot be free without it because you know it already; your body k nows it already.Â’ In telling the story truthfully, the ill person rises to the o ccasion. (Frank, 1995, p. 63) Illness narratives have been written about such ai lments as breast cancer (Olive, 1996), chronic fatigue syndrome (Strauman, 1997), a nd emphysema (Ellis ,1995). The illness narratives used in this research provid e the reader with unique insight into what it is like to live with AIDS/HIV. The g oal is to explore these true stories about AIDS and how they use redemption dramas to attempt to change the readersÂ’ view of both the disease and the diseased. In addition, a d ramatistic analysis will show how the patient moves toward redemption by sharing his/her story with readers. These narratives
25 encourage readers to avoid the lessons the authors had to learn the hard way, but these stories also help to see that people with this dise ase are not so different from the audience. In addition, these narratives help to ma ke AIDS/HIV statistics a reality. A number is easy to dismiss, but when a reader identi fies with an author of one of these narratives, it is harder to ignore the human messag e. Communication scholars Brosius and Bathelt (1994) state, The aims of exemplifying an issue with individual experiences (very often dramatic) are to increase vividness and perceived a uthenticityÂ…. this is because research in social psychology has demonstrated the difficulties people have in processing or comprehending general statements that include percentages, probabilities and so forth. (p. 50) This quote reinforces the belief that statistics ar e not persuasive in and of themselves and, therefore, must be supported with a necdotes to reinforce the message and make it more credible to the reader. Limitations of Research The amount of literature available on AIDS/HIV is s o extensive that it would take years to read all the material available and report on it adequately. For that reason, some limits of the research must be detailed. This research does not explore AIDS as a worldwide epidemic, breaking it down into each country. It does not investigate AIDS/HI V as only a homosexual disease. It does not specifically focus on womenÂ’s or menÂ’s med ical issues associated with the virus, nor does it discuss all the money spent on research and treatments or vaccines. While AIDS/HIV is a political issue, and one cannot ignor e the politics of its history and its
26 victims, this research will not be an expressly pol itical analysis of these texts. The narratives chosen are political in that they seek t o change opinions and attitudes about AIDS/HIV and those infected, but the purpose of the research for this dissertation is to focus on the issue of blaming the victims/patients for their own infection. These texts detail the lives of those who are positive or someo ne close to one who is HIV positive, and as such provide insight into what it means to b e HIV positive or have AIDS in a society where many are blamed for their own ailment This research does explore the texts of those who w rite and publish their own stories. It does look at some of the people affecte d by this disease and the stories they tell to help themselves and others understand their illn esses. More specifically, the research explores the ways in which these narratives move th rough BurkeÂ’s concept of identification and redemption; that is, how each ad dresses pollution, purification, and redemption. Looking at AIDS illness narratives in t his manner will allow for a better understanding of how these authors responded to con tracting the disease and how they want the readers of their stories to respond and ac t as well. The way the authors portray either themselves or others shows that they are hum an beings fighting an undeserved disease. Not all authors of AIDS/HIV texts seek redemption o r the need to address any blame at all. There are some narratives that just tell the story of being HIV positive. However, for the texts that do deal with blame and redemption, an investigation using BurkeÂ’s theory may provide a better understanding o f why, how, and how well this rhetorical approach can work with these types of il lness narratives.
27 Communication Response to AIDS/HIV Research The dominant story about AIDS is told most often by physicians using facts and statistics. From a rhetorical perspective, statist ics are not very persuasive. The protagonists of the chosen narratives either have A IDS/HIV or tell the story of someone else the know. This is a disease that many still m ark as a form of pollution. The authors do not want to be labeled as Â“polluted,Â” Â“sinfulÂ” o r Â“dirtyÂ”, and therefore attempt to find a way to remove this pollution or guilt. If the rhet oric has been successful, once the book has been read, the reader should have a new underst anding of AIDS patients, an understanding that will hopefully prevent the reade r from judging those who are HIV positive. Rueckert (1982) succinctly explains, Â“Pe rsuasion to this idealÂ—in the sense of bringing man to knowledge through theoretical discu ssion and applied criticism, with knowledge designed to effect a change in attitude, and the change in attitude eventually to result in an altered course of actionÂ—is the pri nciple motive behind all of BurkeÂ’s recent effusive and often extraordinary rhetoricÂ” ( p. 140). If the reader identifies with the authors of these texts, a new view of AIDS/HIV patients can emerge, one which includes an increased empathy towards those who are ill. This change in viewpoint is done through communication and it recontextualizes the definition of this illness and how one talks about it (Adelman, 1992; Bloom, 1997; Bow en & Michal-Johnson, 1990; Himley, 1999); Kirkwood & Brown, 1995; Metts & Fit zpatrick, 1992; Salmon & Kroger, 1992). Cherry (1993, 1996) ethnographically explores the i solation of 24-to 46-year-old men with AIDS, as well as public reactions to a 29year-old male who died of AIDS. He writes about his own story while he tells the stori es of the men and women he met while
28 researching the Tampa AIDS Network (TAN). Another publication (Gregory and Longman, 1992) details the way that mothers respond to losing their sons to AIDS. Ezzy (1991) explores both qualitative and quantitative r esponses to AIDS/HIV in Australia. Vinney and Bousfield (1991) and Pittam and Gallios (1996) also explore narrative analysis from a quantitative point of view, and use ANOVA coding to see how often certain key phrases are used by those who talk abou t AIDS. Lastly, Vanderford, Smith, and Harris (1992) looked at a value analysis of the narratives that HIV positive patients and their doctors tell before and after course on e thics. ReevesÂ’ has published the majority of the rhetorica l work on AIDS (1990, 1992, 1996, 1998). Her texts tend to be close textual an alysis of certain aspects of the phenomena of AIDS/HIV. For example, one article ex plores the new language that was created when doctors began to diagnose AIDS patient s. It also shows the rhetorical tension between doctor and patient as AIDS patients tended to be young, intelligent, affluent, and medically knowledgeable (Reeves, 1986 ). Another publication was a close textual analysis of the medical debate between Gall o (1991) and Montagnier. Both claimed to have discovered the AIDS virus first, bu t Reeves argues that the rhetoric used in these debates showed that GalloÂ’s choice of lang uage was much more concise and depicted that he did, indeed, discover the virus (1 998). MontagnierÂ’s language was less direct and more collectivistic, and Reeves argues t hat it did not sound as definitive as GalloÂ’s claims. Her other two articles on AIDS wer e precursors to these two major communication publications, both exploring early me dical accounts and the discovery of AIDS/HIV (1990, 1992).
29 None of these communication scholars has examined A IDS/HIV narratives as a redemption drama (Burke, 1966, 1984b). Narratives told by the person who is ill or a close loved one have not been looked at in such a m anner either. By using a dramatistic approach, a critic can explore how the pollution, p urification, and redemption in each story attempts to persuade the reader to adopt a ne w understanding of AIDS/HIV and those who are infected. A dramatistic analysis wil l show how each AIDS illness narrative assists readers Â“so that each person, in his [sic] way, may peacefully and intelligently pursue the better lifeÂ” (Rueckert, 19 82, p. 161, original emphasis). More to the point, it will show how, through the language o f identification, the authors seek to redeem the Â“at faultÂ” status on the hierarchy of il lness by repositioning what it means to have AIDS/HIV and how this sacrifice of normality a nd health lead to a redemption of AIDS/HIV as a blameless disease. Chapter Organization This first chapter gives a detailed history of AIDS /HIV, and explains what is being looked at and how it will be analyzed using B urkeÂ’s redemption drama. Included as well is a section on research limitations and ot her communication research done on the subject of AIDS/HIV. Chapter Two is a summary about each of the four AID S narratives and will include a history or context of the time in which i t was written. There is no analysis in this chapter, only an AIDS/HIV context and plot sum mary for each book. However, a brief overview of the dissident view of AIDS/HIV is also explored. Chapter Three begins the analysis of these stories as redemption dramas by exploring what Burke means, and what others have sa id, about pollution/guilt. The
30 research proceeds to analyze all four books, separa ted by subheadings, and shows how pollution/guilt is evident in each one. All of the se narratives must deal with the medical pollution of the body and the moral pollution assoc iated with AIDS. Most of society would argue that these individualÂ’s blood is tainte d, and as such, these authors must deal with this perception. For Ryan White the pollution was mostly social, for Janice Burns it was medical, for Pedro Zamora it was his Hispanic c ulture, and for Roger it was the medical establishment. Chapter Four begins with a brief description of pur ification, then follows with a breakdown of each book and shows how each patient i s either victimized, engages in mortification, or both. Ryan does both; he is the scapegoat for AIDS, but he is also our AIDS savior. Janice covertly scapegoats her husban d and internalizes a great deal of blame and shame. Pedro does a bit of scapegoating, but it is Judd who does most of the mortification due to his own lack of knowledge abou t AIDS. Lastly, Roger and Dr. Bob blatantly scapegoat the traditional medical establi shment and also certain behaviors in which others are engaging. Chapter Five begins with a literature review about redemption, what it is and how one does it. The chapter then proceeds through the four books and shows how the text allow for the authors to be redeemed in some way. Ryan, JaniceÂ’s husband, and Pedro all died at the end of their books, so their redemption is a bit different. But Janice and Roger are still alive when their stories end, and so thei r redemption is about coping and living. The final chapter is a conclusion. It summarizes s ome findings and then explores the gaps where more research needs to be done. In addition, it focuses on what each
31 redemption drama has told us about the likely motiv es each author had for writing his/her narrative.
32 Chapter Two: Subjects of Study One day you wake up with the beginnings of a sore t hroat and have swollen glands. This coupled with increased f atigue cause you to call in sick for the day and go back to bed. Three days later you are feeling no better, so you make an appointment to se e your physician, thinking that maybe you have the office flu or at w orst, a student has somehow shared his/her mononucleosis with you. You r doctor looks over you, feels your glands and requests extensive blood work, including an HIV test. She hands you a prescription for the lat est antibiotic and sends you home for more bed rest. Great news! By Monday of the following week you are feeling much better. The antibiotics must have worked on your flu or cold or whatever was ailing you. The d octorsÂ’ office calls with your test results and asks that you come in to disc uss an anomaly with one of the tests. When you arrive, your doctor informs you that you have tested HIV positive. It is as though someone has t aken all the air out of the room and hit you with a sledge hammer at the sa me time. The room spins out of control, and you begin to think about the life that you will never lead. You do not understand! You do not do IV drugs, you are not a homosexual man, you are not promiscuous but not a v irgin either, and have never received a blood transfusionÂ…how did thi s happen? And then it hits you: society will never look at you the sa me way. You are now infected, diseased, your body riddled with the mode rn day plague, and regardless of how you became infected, most people are going to think you did something to deserve your fateÂ…(Garrett, 1994).When AIDS first emerged in the early 1980Â’s many th ought it to be solely a disease of those who engaged in deviant sexual or d rug using behaviors. Even once it was proven to also be transmittable via heterosexua l intercourse, some continued to believe that AIDS and later HIV were the result of sinful acts relating to sex, drugs, and sexual preferences. Now more than twenty years in to the epidemic, some still believe that if one is diagnosed with HIV, that person is t o blame for his/her condition. However,
33 the amounts of people who believe this to be true r epresent a much smaller group than in the past (Garrett, 1994). Still, the question of b lame exists. The books chosen for this research reflect the stages of public acceptance of HIV. In the early 1980Â’s, anyone who was diagnosed with HIV or AIDS was thought to be a pariah and cast out of society due to fear. By the 1990Â’s, the realization spread tha t this was a non discriminatory disease. While victims were still looked at as being at faul t or responsible, they were no longer treated as infectious and the focus became on treat ing them as human beings, raising money, safe-sex education and finding a cure. In a ddition, alternative theories about what really causes AIDS have been proposed and expl ored in legitimate scientific circles. In the new millennium, some have become complacent about AIDS/HIV, and no longer see it as the terminal and deadly condition that it is. Many also expect a cure to be discovered at any moment. And yet, despite increme ntal changes in beliefs about this ailment, many AIDS/HIV patients feel the need to de fend their status to others, often having to explain why they are not to blame (for th eir condition) regardless of the method of contraction. The four books chosen for this research represent p eople who are trying to change these attitudes about those infected with AIDS/HIV. Each author still feels the pressure to defend him/herself against the issue of blame. So, while it might appear that many more are tolerant of AIDS/HIV, the reality may be t hat people still fear this disease as those with AIDS/HIV continue to defend themselves t o those who are not infected. This chapter will provide a brief rhetorical situation f or each narrative. In addition, it will also provide a short summary of each narrative and ident ify the main characters in each.
34 Ryan WhiteÂ’s Story The prevalent hegemonic narrative about AIDS in the early 1980Â’s was that it was caused by the Â“deviantÂ” behaviors engaged in by men having sex with other men (Shilts, 1988). Statistics complied by the CDC in early 198 4 show the group at highest risk of acquiring AIDS were gay men (72% of patients). This led many to conclude that it was caused only by what some in society deemed abnormal homosexual practices. As a result, those who found themselves diagnosed, homos exual or not, were often treated as pariahs, much like leprosy patients had been in the past (Sabatier, 1988). In addition, these same people who were ill were blamed for thei r disease, as though they had done something evil to deserve this fate. Ryan WhiteÂ’s AIDS experience was important because he was a 13 year-old boy who was not homosexual, Haitian, an IV drug user, o r heterosexually active. Ryan was a hemophiliac who needed Factor VIII, created from hu man blood, to control his bleeding. Hemophilia is the inability of the blood to coagula te, so the person does not stop bleeding when injured (White, 1992). Factor VIII is a blood clotting product given to people who suffer from Hemophilia (White, 1992). It was not k nown at the beginning of the epidemic that AIDS could be transmitted via blood, so no one knew that Factor VIII, which was made from blood products, could also tran smit the virus. Due to his method of infection, Ryan was the poster child for Â“innocentÂ” AIDS in the early 1980Â’s until his death in 1990. He was outspoken about living with AIDS and as a result his name and face may have become a symbol for the disease. In addition, Ryan fought hard to be allowed to go to school despite having AIDS, but ot hers tried to keep him out due to misconceptions about ways this infection could be s pread.
35 The CDC reported the following information about p ediatric AIDS cases in 1984, which helps provide the context for RyanÂ’s situatio n: Twenty-nine (40%) of the 72 infected AIDS pediatric patients came from families in which one or both parents had histories of intra venous (IV) drug abuse; 17 had one or both parents who were born in Haiti; 12 had received blood or blood components before their onsets of illness; four had hemophilia; one had a father who was bisexual; and one child's parents deny any risk factors. (CDC, 1984) This indicates that out of 72 pediatric AIDS patien ts 13 years old and under, only 4 had hemophilia. Ryan was one of these four. There wer e a total of 52 hemophiliac cases including both adults and children, between 1981 (w hen surveillance on the disease first began) and 1984 when Ryan was diagnosed. This was how Ryan contracted the virus; it was not by choice, nor was it through any fault of his own. This was also the reason Ryan decided to write a book about his experiences. RyanÂ’s book entitled, Â“My Own StoryÂ” was published in 1992, and was a bestseller. Both Amazon.com and Barnesandnoble.com readers continue to rank it as the number one book about AIDS. Many had read this boo k and this exposure allowed it to shape how people viewed AIDS, defined it and identi fied with Ryan White as an innocent who happened to be ill. Ryan took this op portunity to show the world that he was not to blame for his fate. His book made it cle ar that he was no more deviant than any other teen-age boy; rather, he was an innocent victim scapegoated by the ignorant. The chapters to come will explore the concept of po llution as one aspect of RyanÂ’s redemption drama. Since society viewed AIDS as a m oral failure, Ryan had to find a way to redefine AIDS so that it became a medical co ndition instead of a moral one. In
36 addition, he was scapegoated by his community for h aving AIDS, but in this text Ryan resists the blame by showing, through the concept o f identification, how normal he was. One way he deals with the guilt is by purification, in this case giving up his freedom and anonymity by becoming a poster child for AIDS. Thi s type of victimage implies that he purified himself by offering his own life for publi c scrutiny, whereby he gave up the freedom and privacy that most terminal patients sho uld be awarded. Finally, at the end of the drama, RyanÂ’s redemption occurs when the text p rovides arguments to support that he too is normal. JaniceÂ’s Experience While homosexuals comprised most of the early AIDS/ HIV cases, they were not the only group who contracted the virus. The CDC st ated that in 2004, 11 percent of all AIDS/HIV cases were due to heterosexual transmissio n. This number is relatively low compared to homosexuals, who still comprise 46 perc ent of infections (CDC, 2004). This statistic may cause some heterosexuals to beli eve that they are not at risk for contracting the virus simply because they engage in heterosexual intercourse. This is simply not the case. Today, much more is known abo ut this disease and how it is contracted, but current trends indicate that HIV in fection continues to increase in all categories (CDC 2004). Anyone who has unprotected sex, or uses IV drugs is at risk. The exceptions are those who receive donated blood, since this number has significantly decreased, but there is still a small chance infect ion may occur (Stine, 2004). By 1987, the year that SarahÂ’s Song was written, there were a total of 46,000 AIDS cases. Of those infected, less than 10 percen t were traceable to heterosexual sex. Women comprised only 2.6 percent of the total infec tions (CDC, 1987). Even with these
37 numbers, white gay males still represented the larg est numbers of all groups. Most white, heterosexual couples thought they did not have to w orry, but an unfortunate few were tragically wrong. SarahÂ’s Song deals with the issues of the heterosexual transmis sion of AIDS/HIV. This narrative details the lives of Janice and Bill starting in 1987, when both were diagnosed as HIV positive. These were two married, educated people who never would have thought themselves at risk until one day when a test result proved otherwise. Unlike Ryan who received tainted blood, Janice and Bill we re a monogamous couple who had 5 prior sexual partners between them. Their narrativ e is startling for many because it does not conform to the belief that AIDS/HIV affects onl y deviants and miscreants. Their story shows how everyday people can and do get AIDS /HIV. While this book was not a New York Times bestseller like RyanÂ’s autobiography, it, too, received five stars from readers at Amazon .com and Barnesandnoble.com. The book fit with the selection criteria in that it is a detailed account of life with AIDS/HIV, centering around the ailment. In addition, it chal lenges the issues of blame and presents an alternative to the idea of who contracts this di sease. It creates a vivid picture of life with AIDS/HIV. Many people who think they are safe from the virus are married couples who are monogamous. This story serves as a reminder that AIDS/HIV can and does happen to anyone. The title of the book repre sents the life that Janice and Bill were denied with their infection. Sarah was the name of the daughter they would never have. The analysis of this narrative will look at how Ja nice uses a graphic depiction of AIDS/HIV, identification, and emotional responsibil ity to persuade the reader to understand what it means to have AIDS/HIV. It chal lenges any preconceived notions the
38 reader may have about this disease, and shows how t his couple, who contracted the disease via heterosexual monogamous sex, are not to blame for their fate. Janice will show us the pollution of AIDS both in their lives a nd their bodies. The text will then explore how she and her husband mortified themselve s to help others avoid a similar fate, and finally will show that redemption occurs when o ne sees that Janice and Bill were not to blame for their illness. PedroÂ’s Message In 1989, AIDS/HIV had knowingly been around for abo ut 8 years, and in that time, the CDC was aware of roughly 83,000 reported cases (CDC, 1989). Of these cases, 90 percent were men, and 68 percent of those men ha d contracted AIDS/HIV via homosexual sex. The number of minorities infected with AIDS/HIV had risen at 2.8 times the rate of Caucasian men. The median age fo r men contracting this disease was 37. The total percentage of Hispanic males with th e disease at this time was about 16 percent (CDC, 1989). With these statistics in mind, and knowing that the first group of people to become ill with the virus were homosexuals, it was appropriate one of the narratives be about a homosexual man living with HIV. Pedro was one such young man, who made his disease, as well as life and death with it, ver y public. But Pedro was unique in the greater AIDS narrative because he was a Hispanic ma le who was diagnosed at age 17. Pedro and Me was not written by the subject, Pedro, but rather by his close friend and one-time roommate, Judd. In fitting with the r esearch parameters, it was a narrative about a person with HIV and/or AIDS and life with t he virus. While it was not a bestseller, it was the first book about homosexual AIDS that earned a five star rating by
39 readers on both Amazon.com and Barnesandnoble.com. This is important because many mainstream readers may not want to read about gay m en and AIDS, but PedroÂ’s story seemed to rise above his sexuality and become more about a person with AIDS. In this case, Pedro was a young homosexual Cuban man who co ntracted the virus while in high school. What makes this book so different from the others is the format of the narrative. Some of the previous books did contain pictures of the protagonists and loved ones usually before major illness set in, but these were photographs taken with a camera. However, Judd is a cartoonist for a living. So, wh ile he told his narrative about life with Pedro, and did use words to do so, he also used the comic book format as an alternate vehicle for his message. In addition to printed text, we had a visual text t hat supported the words being used with images. This format was appealing for a number of reasons, the most obvious of which was its appeal to the audience. This comi c book format called to the younger generation. The fact that both of these young men appeared on MTVÂ’s Real World may have also appealed to a younger, hipper culture. D espite its unique delivery method, PedroÂ’s story, as told by Judd, provided an educati on about AIDS/HIV. It should be noted that this research is not the on ly one to recognize the impact that Pedro and his narrative had on both the Latino culture and AIDS/HIV pedagogy. Munoz (1999) adds, For five months, Zamora was one of the few out gay men appearing regularly on television. He was also one of the few Latinos see n regularly on national television. Furthermore, he was one of the few out people living with AIDS on television. Yet Zamora was more than simply repre sented; he used MTV as an
40 opportunity to continue his lifeÂ’s work of AIDS/HIV pedagogy, queer education and human-rights activism. (p. 151-2) The quotation reinforces the impact that Pedro had on those who watched the show. Present in this narrative form were definitions of being positive, both in written description and pictorial representation. In addit ion, identification with the protagonist and the writer, and an educational perspective of A IDS/HIV were also included. The analysis of this story will explore the guilt exper ienced by a gay Hispanic male in a Latino culture where homosexuals are marginalized. In addition, it will show how Pedro and Judd purified themselves by exposing their live s to a mass audience. Finally, it will investigate how PedroÂ’s death and JuddÂ’s cartoons l ed to redemption of young people with AIDS and gave a face to the disease to which m any could relate. RogerÂ’s Differing View In December of 1986, over 28,000 cases of AIDS had been reported to the CDC. Of this number, 93 percent of the cases were male, 63 percent were Caucasian, and the average age of the patient was 36.8 (1986). In add ition, 17 percent of the total cases listed IV drug use as their only possible source of infection. This meant that patients claimed to not have participated in anal sex with o ther men, did not receive a blood transfusion and were not of Haitian origin, which b ecause of the large numbers of infections was a group once thought to Â“carryÂ” the virus (CDC, 1986). Despite the small percentage numbers, at the time, many drug users wo uld sell their blood and marrow for drug money. These people unknowingly tainted the b lood supply for transfusion recipients and hemophiliacs, like Ryan White. Beca use HIV was passed via blood, injecting drugs while a small amount of anotherÂ’s b lood remained in the vial almost
41 guaranteed infection (Garrett, 1994). It was for t his reason that some feared infection via needle contamination. And of course, because drugs can distort the mind, clean needles may not have been a priority.. Roger, the main character in this chapter, was a he roin user. His addiction began during the Vietnam War as a way to cope with the da ily atrocities he was forced to deal with as a military medic. Eventually, he did overc ome his addiction, but sadly not before becoming infected with AIDS/HIV. Although Roger ne ver actually stated when he became infected or diagnosed, his story in the book began in 1986. This story was different from the other narratives. It was a true story about a person living with AIDS/HIV, but Roger was not tell ing his own story, rather it was told by his good friend and doctor, Bob. The entire boo k was about RogerÂ’s recovery from AIDS. This book was not a New York Times bestselle r, but it did receive a five star rating from Amazon.com and Barnesandnoble.com reade rs, suggesting that there was an audience for alternative views of AIDS. In additio n, this book was included in study about AIDS/HIV because it had been printed in nine languages, in its sixth edition, and was published by a small press. The fact that it h ad been edited six times and had been published in different languages led to the conclus ion that the message might not only be important, but also appealing to multiple audiences Interestingly, there were not that many books written by HIV positive former drug user s. Therefore, the selection was somewhat limited, but it did fit with the criteria and it also had the added bonus of being a resistant narrative to the belief that HIV was th e sole cause of AIDS. This is a very complicated and lengthy debate, but the brief infor mation provided will give the reader a context for RogerÂ’ story.
42 HIV Not the Cause of AIDS? Could it be that after 20 years doctors and scienti sts were wrong? HIV might not be the cause of AIDS? How could that be? It has b een taught that the retrovirus HIV attacked the T-Cells causing the immune system to s lowly, over a period of decades, break down and become disabled, unable to even figh t the most basic infections. Who could possibly advance the idea that HIV did not le ad to AIDS? Not only did this question perhaps the most researched disease in his tory, but it also questioned the motives of the medical establishment who might have willingly and knowingly mislead us. The person who could and did ask this was Dr. Peter Duesburg (1987, 1988, 1989, 1991, 1992, 1993, 1994, 1995, 1996). However while some may think his ideas were unfounded, he was a reputable researcher who w as admired and respected by his peers and colleagues. This perspective changed in 1987, when he published his first article challenging retroviruses as the cause of ca ncer and by extension the cause of AIDS (Duesberg, 1987). Dr. Duesberg was known as an exp ert in retrovirology. HIV has been classified as a retrovirus. He was also a full pro fessor of Molecular and Cell Biology at the University of California, Berkley. Duesberg was a very well known and respected scient ist. He received the outstanding investigator grant and award from the N ational Institute of Health (NIH) for seven consecutive years, and discovered the first s o-called cancer gene in 1970. At that time, Duesberg also discovered the retrovirus and e ventually concluded that this type of virus did not cause cancer. He also claimed in tha t same article in 1987, that it could not cause AIDS either.
43 Surprisingly, Duesberg was not the only one who fou nd the hypothesis that HIV caused AIDS questionable. Other supporters of Dues berg include journalists, doctors and other researchers (Callen, 1990; Feldman, 1994; Fry 1989; Fumento, 1993; Joseph, 1992; Willner, 1994; Young, 1993). The establishme nt believed he was incorrect. What was DuesburgÂ’s argument? He felt that retroviruses did not cause cancer. The bigger implication was Duesberg believed that retroviruses were not harmful and therefore HIV, if labeled as a retrovirus, was not cytotoxic, or a ble to kill or damage cells (Maggiore, 2000). Also, while HIV might have been a new virus the opportunistic infections associated with AIDS were not and have been around for a long time (Lauritsen, 1993). If one were to be diagnosed with Pneumocystis Carinii Pneumonia (PCP), and not have tested positive for HIV antibodies, then that perso n only had PCP. However, if that same person tested positive for PCP and did have antibod ies to HIV, then that person had progressed to AIDS (Maggiore, 2000). This shows t hat the definition of what constitutes AIDS versus an infection was the presence or absenc e of HIV. According to the CDC (2002), there were 29 opportun istic infections that made up AIDS. The criteria for a diagnosis of AIDS was a T-Cell count lower than 200 and a chronic bout with one of the 29 opportunistic infec tions. Duesberg and his fellow dissidents did not dismiss the horrid pain and suff ering that an AIDS diagnosis brought with it, but rather wanted others to understand tha t a diagnosis as HIV positive did not mean a death sentence (Duesberg, 1996, 1997; Maggio re, 2000; Root-Bernstein, 1993). Maggiore (2000) found that the current HIV blood te st was unreliable and very often showed a positive reading if one had been infected with other diseases that also produce antibodies, such as mononucleosis, malaria, hepatit is, herpes, and some forms of lupus.
44 In the United States, malaria was not the threat th at it appeared to be in Africa, but many students seem to contract mono while in college, an d this was also the age group that appeared to have the most access to free or inexpen sive HIV tests (Cantwell, 1988). If HIV did not cause AIDS, what did? Duesberg (199 6, 1997) et al believed that certain behaviors could cause immune-suppression. This would include using drugs, such as poppers, heroin, cocaine, etc., having mult iple sexual partners with multiple sexually transmitted infections (STI), and taking A ZT, the drug prescribed to help people with AIDS/HIV live longer and fight off the opportu nistic infections. All of these activities, it was claimed, caused the immune syste m to wear down, thereby allowing the opportunistic infections to take hold. Duesburg (1 996) argued that once a person produced antibodies to an infection, it was a sign that the body had successfully defeated that virus, and the antibodies were an attempt to g uarantee that the person would not become re-infected with the same ailment. Chicken Pox might be a helpful example. After overcoming Chicken Pox, very rarely did that person become re-infected with the virus again. This was because the body had now lea rned to fight off that particular bug by producing antibodies, which Â“rememberedÂ” that sp ecific virus. Mononucleosis does the same thing, which was why if one was ill with a harsh enough strain, that person was likely not to become re-infected if exposed to othe rs with mono (Stine, 2002). Many wonder about the possibility of Zido vudine (AZT) causing the opportunistic infections it was prescribed to prevent. Lauritsen (1993), Duesburg (1997), Shenton (1998), Kitzerow (2000), Maggiore (2000), and Null (2002) seem to be in agreement that AZT killed patients. In the early 1960Â’s, AZT was researched as a possible cancer therapy drug, but due to its highly toxic side effe cts was shelved until the mid 80Â’s, when
45 Glaxo-Wellcome, the pharmaceutical company who crea ted AZT, decided to use it in clinical trials for HIV and AIDS patients. Much co ntroversy surrounded the actual trials of the drug, but AIDS dissidents felt that the tria ls were fraudulent and the results skewed. For example, the trials were set to procee d for a certain amount of weeks, but were terminated early due to the outstanding succes s of the drug. However, weeks later those same patients who had initially shown improve ment began to decline in health (Lauritsen, 1993). In addition, the trials were su pposed to have been double blind studies, where neither the doctors nor the patients knew who was actually taking the drug and who was taking a placebo (Lauritsen, 1990 & 199 3). Yet, some patients admitted to knowing which drug was which due to a certain after taste left by AZT. When a patient discovered he/she had a placebo, or sugar pill, tha t person would ask another member of the trial to share AZT (Maggiore, 2000). In the en d, very few people were taking the placebo, but were showing the same side effects as those taking the actual drug! The trial was skewed, and even when the people at Wellcome di scovered this they chose to ignore it because the people who were surely taking the dr ug had higher T-cells than those who were not taking it (Lauritsen, 1990 & 1993). The t rial was terminated early. Later when researchers went to find the original patients who were still taking AZT, most had died (Duesberg, 1996). The FDA, wanting to discover the efficacy of the drug, conducted its own trial consisting of HIV positive veterans, We found that early Zidovudine (AZT) therapy delaye d the progression of AIDS. We also found that the survival was comparable in t he two treatment groups. That is, no benefitÂ—no detectible benefit. We foun d that early Zidovudine resulted in transitory benefits in whites and neutr al or harmful effects in blacks
46 and Hispanic patients. And we conclude, that furth er studies were mandatory in minority groups. (Lauritsen, 1993, p. 276) Provided above is a very cursory look at the dissident AIDS debate. It is included here so the nuances of RogerÂ’s story and Dr. BobÂ’s claims that Roger had been cured would have a context. While this narrative was obv iously resistant to the entire dominant AIDS narrative in general, it also addressed the is sues of blame in similar ways as the other narratives. It was for that reason this narr ative was important. In addition, Dr. Bob is rejecting the traditional medical model of AIDS/ HIV which suggests that this is an immune defiencey caused by a virus. Instead, he an d Roger propose, through RogerÂ’s own experience with being ill, that AIDS is a break down of the system brought on by years of abuse: alcohol, drugs, lack of exercise, etc. The alternative proposition is that one needs to rid the body of such impurities, by re jecting traditional medications and illegal substances in favor of more natural, holist ic approaches. The science rejected is the belief that HIV is a virus that can break down the bodyÂ’s immune system. Allegedly, Roger and Dr. Bob have found that HIV is nothing mo re than a passenger virus, coincidently found in those suffering from AIDS. I n upcoming chapters, it will be shown that RogerÂ’s experience with AIDS was serious and h e was not to blame for contracting his ailment as he was addicted to drugs because of his experience in Vietnam. In addition, the research will focus on the identifica tion that must occur between reader and author (s) so that we believe much of RogerÂ’s story one that deals with a new definition of blame, and his cure. Lastly, the research will investigate how both protagonists shift blame on to the traditional medical establishment f or AIDS, thus reaching redemption by redefining what it means to have AIDS.
47 Chapter Summary The focus of this chapter is an introduction to the texts being analyzed and the rhetorical situation in which they were written. W hile AIDS/HIV statistics have changed over the years, the idea of blame and stigma are st ill very much alive for those who find themselves diagnosed with the disease. The narrati ves chosen for analysis show the defensive posturing that those infected feel they m ust take to prove to others that they are good people who happen to be sick. All try to rede fine who can have AIDS/HIV and what it means to be ill with it. The connection be tween these stories is how they all struggle to make sense of their realities. Each na rrative is shocking in that it provides the life stories of those who are not typical of this s yndrome. They are forced to make choices about how to define AIDS/HIV, and the stori es analyzed show the ways in which those challenges occur. The narratives highlight w hat happens when people not only become ill, but are infected with a disease that al so includes a moral stigma as well. The only standout to this is RogerÂ’s story, as he tries to redefine the entire ailment, thereby making it something that does not require stigma or blame at all, but rather responsibility on the part of the traditional medical establishmen t. The fact that there is a dissident view of this condition that seems to be well suppor ted suggests that people are looking for different ways to deal with what it means to ha ve AIDS. In the next three chapters, the analysis will break down each of these four tex ts, looking at guilt, how each purified him/herself and finally how all found redemption to their stories.
48 Chapter Three: The Need to be Defined as Equal Although he used the word Â“guiltÂ” often, Burke nev er clearly defined what he meant by the term. For Burke, guilt can be charact erized by using some of the following adjectives: anxiety, social tension or embarrassme nt (1966, 1969a, 1969b, 1984b). The term Â“pollutionÂ” can be used interchangeably with t he concept of guilt, which works well with the research presented here about AIDS/HIV. B obbitt (2004) implies that guilt is a sense of responsibility and shame, but it could als o include a feeling of separation from others or the failure to live up to standards impos ed by the self, society or both. These feelings can lead to reduced social cohesion with o thers and leave people with the idea that they are less than others (Brock, 1990). In o rder to combat this guilt, people must find a way to become whole again, hence the creatio n of the redemption drama. Once the guilt has been identified, the rhetor will need to find the purification and redemption acts as well. Gusfield (1989) succinctly summarizes Bur keÂ’s ideas of redemption by stating, Â“If there is hierarchy and social order, there is a lso a rejection of order and the consequent guilt. Here is the foundation of BurkeÂ’ s society: if drama, then conflict. If conflict, then hierarchy. If hierarchy, then guilt If guilt, then redemption. If redemption, then victimageÂ” (p. 33). This chapter will explore issues of guilt. In order to provide an understanding of what constitutes guilt, BurkeÂ’s views will be explored followed by clarifying examples.
49 Bobbitt (2004) analyzed the redemptive qualities o f Martin Luther KingÂ’s Â“I have a DreamÂ” speech. Bobbitt argued that King made his audience feel guilty about segregation. Some Caucasian AmericanÂ’s at the time felt shame they had kept Blacks from the American Dream. In addition, many knew th at segregation was wrong and went against the Christian ideals of unity and love. Ki ng used the terms Â“morally wrong and sinfulÂ” to reinforce the religious ideals and creat e feelings of guilt (Bobbitt, 2004). King allowed for the possibility of unification, by stat ing that Caucasians and Blacks could unite and end segregation. This would right all th e wrongs and would free Caucasian Americans from both a social guilt and a personal o ne. Scheibel utilized BurkeÂ’s redemption drama to inve stigate everyday life (1995, 1999, 2002). In his article on surfing Scheibel e xplores how surfers redeem themselves in surfing magazines as they write about intimidati on and exclusion in the surfing culture (1995). These Â“writingÂ” surfers cannot go out on t he waves and surf because of territory issues, so they found another way to get their mess age across. Scheibel explains that this culture needs to be redeemed because of the hierarc hy of those who can and those who cannot surf certain waves. The Â“ridingÂ” surfers cl aim the water as theirs and, therefore, certain groups of surfers are prevented from surfin g in certain waters. This creates feelings of shame, guilt, hurt, and anger among the Â“outedÂ” surfers. These excluded surfers fight the perceived injustice by writing fo r surfers and non-surfers alike. They argue that the water belongs to no one, and accuse those who have excluded them of being petty. Since the Â“writingÂ” surfers could not become a legitimate part of the other group based upon their talent in the water, they ha d to create a new hierarchy by making
50 the other group look bad. Through the use of langu age, it became evident that the surfers wanted to replace one surfing hierarchy with anothe r one. The analysis that follows will explore how each pr otagonist and/or author reveals and addresses the guilt proposed by Burke. In most situations, this guilt is unconscious and only revealed by the language used. These stor ies reveal their issues with pollution of the body by the virus, the feelings associated w ith being ill or uninformed, and conflicts of identity involved with having AIDS/HIV or knowing and caring about someone who does. The guilt stems from not meeting the perceived expectations of both self and society, thereby creating feelings of bein g less than or not equal to others. This is how guilt is defined for the purpose of this res earch. For these protagonists, it is caused by being diagnosed with AIDS/HIV and the mor al stigma that is associated with such a terminal classification. This label then cr eates feelings of guilt in the protagonists, which is evidenced by the terms they use to describ e themselves and their treatment by others. RyanÂ’s guilt stems from his being excluded from the social hierarchy he so very much covets because of his AIDS diagnosis. Janice, being older, has more complicated issues with her guilt, which stem from her inabilit y to attain certain societal roles. In addition, she must also deal with her husbandÂ’s inf ection with HIV and her anger at him for sharing it. JuddÂ’s guilt stems from his need t o repay Pedro for all that Judd learned through his friendship with Pedro. Pedro himself f ears that he will never live up to his blessed status, and his body is dying at age 22. R oger must deal with his past drug use and his current medical condition. Dr. Bob deals w ith his own identity crisis as he moves from trusting in traditional medicine to questionin g all he has done and been taught.
51 The fact that these stories were penned is an indic ation of a larger, societal guilt. This could be to save the lives of others, to educa te those who are positive, and/or to portray the protagonists and AIDS/HIV in such a way that can be redeemed. The major source of guilt found in these narratives is what B urke termed categorical guilt (also known as original sin) (1984b). This is a type of guilt from which everyone in a society suffers from, and it is passed down from generation to generation. For example, one is born into a certain status system. Some people fee l guilty because they have more status than others. Â“Those Â‘UpÂ’ are guilty of not being Â‘ DownÂ’, those Â‘DownÂ’ are certainly guilty of not being Â‘UpÂ’Â” (Burke, 1966, p.15). The end result is a hierarchy where everyone wants to be at a different level and feels guilt for their current standing. Burke calls this a hierarchical psychosis (1966). And the unresolved problems of Â“prideÂ” that are int rinsic to privilege also bring the motive of hierarchy to bare here; for many kin ds of guilt, resentment and fear tend to cluster about the hierarchical psychosis, w ith its corresponding search for a sacrificial principle such as can become embodied in a political scapegoat. (Burke, 1966, p. 18-9) The constant stressing of normalcy, of AIDS as jus t a medical condition, of the need to educate others are all indicators of this c ategorical or societal guilt that Burke explored (1984b). AIDS/HIV is seen as a disease th at is caused by at fault behaviors (Sabatier, 1988). Very few people are classified a s innocent in how they contract AIDS, and this view has been imposed upon these protagoni sts by a society that refuses to see them as normal. This Â“us versus themÂ” mentality is indicative of the up/down status that Burke (1966) discussed. By making people with AIDS different, or lower, others can
52 feel safe about their own lives, and therefore be u p or higher. The protagonists all challenge that ideal and show they are equal with t he rest of society. Ryan and his guilt: Â“What kind of bread does a fag eat? Ryan White bre ad.Â” White, 1992, p. 94 This Â“jokeÂ” is a good indication of what Ryan Whit e had to deal with after he was diagnosed with AIDS. While most teens were out han ging with their friends eating pizza and receiving hickies, Ryan was dying of a terminal ailment that some thought of as the plague of the 20th century. All he wanted was to be like other teens ; he desperately wanted to fit in. Sadly, there were those who refu sed to see Ryan as normal, and this led him to feel guilty about being different. His narr ative is a defense against this view of him somehow being different because he is ill, but the more he claims normalcy, the more obvious his guilt. For most teens, being ostracized by peers for being different is hard enough, but for Ryan it was a reminder that he would never been seen as normal by others. This is most clearly evident on the cover of his autobiogra phy, where Ryan is shown looking like a healthy teen-age boy in a stone washed jean jacke t and matching jeans (it was the 80Â’s!). He is pictured with a huge smile and his h air looks perfect. In this picture there is no indication there is anything physically wrong wi th Ryan. This is the first marker in the text of RyanÂ’s feelings about his medical condi tions. Ryan White was well known because of his battle with AIDS, but the picture gr acing the cover of the book is that of a healthy Ryan. It signifies RyanÂ’s own inability to accept his mortality, and it also expressed his guilt about not being Â“normalÂ”. The book was published not long after
53 Ryan died. There were many pictures that could hav e been used on the cover of this book. But the one chosen was that of Ryan as maybe Ryan wanted himself to be remembered: a healthy, attractive teen. This phot ograph shows none of the segregation he experienced, none of the harassment, and none of the physical issues AIDS brought with it. It is one that represents the life that R yan once had but would never have again: a life at peace. If the photo does not convince some, one only need s to open the book to the table of contents and read the names of the chapters: 1.Growing up different 2.How I got AIDS 3.How I tried to go back to school 4.How I got back into school and had to leave town 5.I come up grinning: How life changed 6.Going to a better place (White, 1992, table of c ontents) The first chapter, growing up different, acknowled ges the hierarchies between those who are deemed normal and healthy and are symbolically raised above those who are seen as abnormal and afflicted. The irony about chapter on e is that growing up different does not address RyanÂ’s AIDS diagnosis, but rather his hemop hilia. RyanÂ’s initial guilt stems from the failure of his body to stop bleeding on it s own. Ryan was born with hemophilia, or the inability of his blood to clot (Ryan, 1992). However, he did not let this defeat or define him a s a sick child. On the other hand, while he tried to be like other boys and play rough, he c ould not play sports because the risk of
54 a serious bleed was too much. It was not society t hat made Ryan feel guilt about his situation, but rather his own sense of physical lim itations. Most kids here are really into sports: they play Â‘ em, they cheerlead Â‘em, they watch Â‘em on TV, especially basketball. Basketball is okay, but when you have hemophilia, you canÂ’t play sports too well because you might get hurt and start bleeding. So I love cars. (White, 1992, p. 9) Note what Ryan does with the basketball hierarchy p revalent in Indiana. He acknowledges it, gives it credibility, explains his reasons for not playing, and then offers something else that he loves more than basketball. It might appear as though Ryan does not feel badly about not being able to play the gam e, but if this were true, why mention it at all? The fact that Ryan spends one full page di scussing the role of basketball in Indiana culture is an indication of feelings of not being included. The statement about cars is meant to show that he has found an alternat ive outlet. In Indiana, however, it is not cars that people love, but basketball. His rhe torical attempt to shift attention just reinforces RyanÂ’s feelings of guilt over his medica l condition. In chapter one, the major focus is on Ryan proving in the text that he can do most of the things other kids can do. BurkeÂ’s (1966) id ea of hierarchy is rooted in the negative, and hemophilia can be seen as the negativ e side of having normal blood. Physical limitations create Â“thou shall notsÂ”. In other words, RyanÂ’s body is telling him that he cannot do the things that other people can. Even if he is protected, should something happen, he will have to deal with it diff erently than other children who do not have hemophilia. Despite this, Ryan greatly downpl ayed the impact of hemophilia on his life, and made it a point to say that his mom did n ot treat him any differently because he
55 might bleed (Ryan, 1992). However, his biological father was not a part of his life, Â“We live in a place where sports is important, but IÂ’d like to remind dad that there are plenty of other things that I can doÂ” (White. 1992, p. 31) This quote shows that he clearly felt his medical condition had something to do with his fatherÂ’s departure, but at the same time, it is meant to make his father feel guilt for leaving his son behind just because he was ill. For a brief moment, this shift in who sho uld be guilty might have made Ryan feel as though he were in a more superior moral pos ition and therefore better than his father. Ryan also categorized his own issues by comparing his disorder to other childhood ailments: I met plenty of kids in bigger trouble than I was. HemophiliaÂ’s not nearly as painful as cancer, where you might need treatmen ts that make all your hair fall out. I felt for kids who had to have che motherapy. Being bald at age three would have killed me right there! Then t here are the horrible burns, or having something wrong with your mind, or all kinds of defects and other diseases you might be born with that mean you need operation after operation. IÂ’d already decided that I didnÂ’t have hemophilia, I was living with it. You can feel well no matter whatÂ’s wrong with you. I thin k thatÂ’s the only way to think. (White, p. 22, 1992) Ryan realizes that if he compares himself to childr en who are more severely or terminally ill, then he can be closer to that idea of normality and therefore rise up the hierarchy of illness. But, also evident in thi s quote is his guilt at putting down those who are more ill. When he says he felt for t hose kids who had to undergo
56 chemotherapy, he is putting himself above them by b eing in a position to feel badly for them. In the next line, however, he stat es that losing his hair at age three would have devastated him, thereby stating th at such children have more inner strength than he would have in that same situ ation. He addresses his own guilt for his condition, but expresses sympathy for those who are terminal. Ryan would later become one of these terminally ill chil dren, and ironically was one when writing this section. The title of chapter two, Â“How I got AIDSÂ” is also a good indication of hierarchy and guilt. This statement implies that it was giv en to him; he did not catch it through any activity of his own doing. Already, Ryan was posit ioning his diagnosis as being something outside of his control, much like being b orn with hemophilia. Actually, it was through the Factor VIII that he needed for his bloo d, that he became infected with AIDS. The medication that had kept him alive for so long was also what would cause his death. Factor VIII allowed Ryan to have as close to a norm al childhood as he could with hemophilia. It is ironic that the medication that brought him so close to being like other kids, would end up segregating him in major ways. In 1984, the year that Ryan was diagnosed, having AIDS was considered the lowest rung of the hierarchy of disease (Garrett, 1 994). It did not matter that Ryan was innocent in his contraction of the ailment, only th at he was infected. Ryan saw his diagnosis with AIDS as another reason why he was di fferent from other kids. For his mother, it was another reminder that she had caused her sonÂ’s illness and infection. Hemophilia is passed from mother to son, and Jeanne RyanÂ’s mom stated, Â“Ryan has AIDS because of his hemophilia. I gave him the bad gene that passed hemophilia on to
57 him. I gave him the Factor that infected him with AIDS. So, if you want to blame anyone, blame meÂ” (White, p.57, 1992). In addition she stated that she wished Ryan had died during the biopsy of his lung that proved his AIDS diagnosis (White, 1992). But Ryan never alleviates his own guilt by blaming his mother. In fact, he praises his mother for putting up with both his hemophilia and his AID S. In this case, he internalizes the guilt and despite JeanneÂ’s words, he places her ver y high on the hierarchy of love by expressing over and over how much she sacrificed fo r him, including moving to another town. Burke (1966) states that those who are seen as pol luted or different by society feel guilt and must try to rejoin society to alleviate t hose feelings. Chapter three in RyanÂ’s narrative details how his community wanted to keep him out of school because he had AIDS. This created new feelings of segregation and anger for Ryan. All he wanted was to be like other kids and go to school. They are dumber than a box of rocks! This is crazy I can ride my bike, I can do my paper route, and I can go to the movies. I can do everything! I like being at school. I do not want to stay home aloneÂ—I want to be with my friends, just like everyone else. (White, p. 95, 1992) Ryan was complaining to his mother that the people keeping him out of school were dumb, they were ignorant about his condition and th ey did not understand how normal he was. This made Ryan more open minded and therefore a good and non-judgmental person. The examples Ryan used about riding a bike delivering papers, and so on are meant to reassure himself that he deserves to be ba ck in school and also reinforce that he has done nothing to deserve the exile imposed upon him by people who do not
58 understand AIDS. It is implied that he could go to school, so Ryan has effectively created a hierarchy where those who do not know abo ut AIDS should feel guilty for jumping to erroneous conclusions about something th ey know nothing about. And by siding with Ryan, the audience could then be define d as open minded and compassionate, not closed minded and cold hearted. Ryan fought long and hard to be allowed to return to school, and even went to court to appeal the verdicts that kept him out. On e of his friends commented that Ryan was very lucky to be kept out of school legally, bu t RyanÂ’s responded he was tired of being home alone. The reality is that while Ryan w as home, he was constantly reminded that he was different than other young people his a ge. In addition, he was being kept out because he was sick, so his attempt to be perceived as normal was failing. One of his girlfriends told him, Â“My parents do not think we s hould hang out anymoreÂ” (White, p. 103, 1992). Here again was the reminder that even when he was permitted to return to school, he was not the same as everyone else. This made Ryan feel sad and isolated. To make matters worse, once he was legally permitted t o return to school, he would often find himself too sick to go. His inability to atte nd school both because of his illness and the efforts made by the people of Kokomo, prevented Ryan from always seeing himself the way he wanted to see himselfÂ—as a normal teenag er. The text shows a side of Ryan that is not always ill, that has feelings, and that really cares about his education. The Â“us versus. themÂ” guilt found in the text allows for a potential identification to occur with Ryan. Chapter 4 details RyanÂ’s return to school, but his guilt was not alleviated by being with HIV negative people. Perhaps Ryan thought tha t being with others who were not ill
59 would make him feel normal, but all it did was allo w students to verbally attack him and constantly remind him that while the law may have p ermitted him an education, his peers would not accept him. However, it was not just in school that Ryan was socially ostracized and reminded of his status. During an E aster service, no one wanted to shake his hand and wish him peace. Even in church, where most people seek redemption for their own sins, Ryan could not find those who would look at him as a church-goer and not someone with AIDS. That day, upon arriving hom e, the WhiteÂ’s found a bullet hole in their front window. It was apparent that the to wn of Kokomo felt polluted by RyanÂ’s mere presence, and resulted to name calling and van dalism to eradicate the pestilence they feared. Once Mom, Andrea and I were walking back to the car at the mall. A kid on a bike whizzed right between us, laughing and shoutin g, Â‘Ryan WhiteÂ’s a faggot!Â’ Mom was telling Andrea and me all the time to keep going, to never feel sorry for ourselves, to remember that we were doing something importantÂ—helping people by educating them. (White, p. 137, 1992) The child on the bike in this quote represents many people at the time in Kokomo, Indiana. This type of verbal abuse, calling Ryan a faggot because he had AIDS, most likely made Ryan feel bad that his family had to su ffer because he was ill. Later in the text, he states that his sister and mother also dea lt with rude comments (White, 1992). These feelings of guilt were compensated by the ide a that the WhiteÂ’s would educate the AIDS ignorant in this little town. By telling her children not to give up, RyanÂ’s mom is saying that they are better than the people calling names. Her message is that their goal of spreading the truth about AIDS was more importan t and more worthwhile than
60 allowing a few comments to dissuade them. This, in turn, would place the guilt on those who did not see the sacrifice the WhiteÂ’s were maki ng for AIDS education. It also shows how the WhiteÂ’s were forced to endure, when all the y wanted was to help other people. It reinforces the support the audience feels toward the White family and their devotion to educate others. RyanÂ’s next chapter explained how after everything that happened in Kokomo, the family decided to move to a town a few miles aw ay. The family was very happy here because they were accepted. The title of this chap ter is Â“I came up grinning: How life changedÂ” (White, 1992). Evidence of a changed hier archy is clear right away. By stating that Â“he came upÂ” Ryan is saying that he overcame t he issues with his old school and neighbors. He was the bigger person, and when he r ealized that he could not educate them nor change them, he threw in the towel and wal ked away. But, at the same time, it paints the people of Kokomo as being mean-spirited, closed-minded, and ignorant. They drove a young boy out of town for contracting a dis ease through contaminated blood products. Simultaneously, his new place of residen ce is described as open minded, accepting, and willing to learn. At his new school, people were in awe of him becaus e he knew so many famous people. For example, one day after taping an episo de of the Today Show, Ryan ran into Tom Cruise, who knew who Ryan was (White, 1992)! A lso, Ryan hung out with Greg Louganis, the HIV positive diver, Michael Jackson, Elton John, and Howie Long. So, while Ryan was not segregated because he had AIDS, he still was not seen as being like everyone else. Now, he was a celebrity, and people treated him as such. This too caused him feelings of guilt, because when a young man ask ed him if he would give up all his
61 fame to be free of AIDS, Ryan responded, Â“How dumb can you get! I snapped my fingers at him and told him like that, IÂ’d give it up like thatÂ” (White, p. 263, 1992). This is an indication that Ryan did not value his celebr ity status because it came from his impending death. Rather, he would have wanted a no rmal life, with girlfriends, cars, pizzas and sex. Instead, he was a famous teen dyin g of a terminal illness. This statement represents all the regrets that Ryan has about his condition, and all the regrets he has about not having a future. Returning to the idea o f Â“being up/being down,Â” in this new school, Ryan was seen as being up due to his fame, where as at his previous school he was seen as Â“being downÂ” because of having AIDS. An d yet, he still wanted to be in the middle. The last chapter is appropriately titled Â“Going to a better placeÂ” (White, 1992). This is an obvious reference to the belief that Rya n was going to heaven when he died. This is also a reminder that Ryan was not at fault for his contraction of AIDS, and despite all the hardships he and his family endured, he con tinued to believe in God. Ryan needed to believe that he was going someplace better when he died, otherwise his life would have been in vain. Despite all the name-calling, a buse and vandalism that he had endured, Ryan portrayed himself as being better, an d understanding that people simply did not comprehend what AIDS really was. He was th e innocent one in this situation, and the text reminds that he was only 18 when he di ed. His ultimate pain was that his body failed him at a time when it should have been the strongest. RyanÂ’s mom, Jeanne, lets her voice be heard in the afterword, and the fact that she feels the need to say anything is an indication of her own guilt. She details his funeral, and ends it with the statement, Â“Make AIDS a diseas e and not a dirty wordÂ” (White, p,
62 275, 1992). Jeanne felt that she had given Ryan AI DS because hemophilia is passed from mother to son. By attempting to redefine AIDS she is trying to alleviate her own guilt at giving her son a terminal illness. The ho pe is that people will not think badly of her and will think about the amazing things that Ry an had done to educate about AIDS in his short lifetime. And, she reminds us that she i s not the bad one in all of this, that Â“RyanÂ’s grave has been vandalized three times. The third time, in June of 1991, they knocked over the big headstone and broke itÂ” (White p. 283, 1992). This moves the audience from focusing on her and blaming her to th ose people who would vandalize the grave of a young man who died. By ending the book this way, the guilt is then left on those who still blame Ryan or say that he deserved his fate. It should be noted that while Ryan does a good job of detailing the physical implications of having hemophilia, he very rarely d iscusses the physical issues his body endured because of AIDS. A few times he mentions h aving diarrhea, fevers and general malaise, but provides few details. Perhaps Ryan fe els guilty about dealing with the issues brought about by having AIDS, and by not focusing o n these issues he does not draw attention to his being physically ill. Also, this lack of description about AIDS and the detailed one about hemophilia actually creates an i mage of AIDS as being a less serious medical condition. RyanÂ’s textual denial of the ph ysical aspect of AIDS downplays the ailment greatly and further reinforces his shame at being infected. Thus far, this exploration has dealt primarily with the guilt felt throughout RyanÂ’s narrative in his own words. However, because Ryan wants to be accepted as being normal and like everyone else, he has to create ide ntification in the text so that the guilt about being ill is removed and placed onto the othe rs portrayed in his text. Burke
63 (1969a) states that in order for persuasion to occu r, the audience and rhetor must feel as though they have something in common. Once these c ommon substances are agreed upon, the parties become consubstantial, or united. This is one strategy used by Ryan to ensure that his narrative is accepted as truth. If the text is rejected as inauthentic, then Ryan may not be redeemed. The text creates identif ication by constantly stressing his normalcy. RyanÂ’s story discusses his being caught smoking, wa nting a dog, going to prom, having dates, loving cars and pizza, and hanging ou t with his friends (White, 1992). These activities are common among most teens; they are not necessarily the behaviors of a deviant. Once a bond is formed with Ryan, the gu ilty become the others who call him names, or hurt his family in some way. The shift i s from Ryan to those who refused to accept him for who he was and saw only his illness. This theme of identification will be needed in the next two chapters when the issues of purification and redemption are addressed. JaniceÂ’s angst: Â“I never thought my life would be a quick read, a c ondensed bookÂ” Burns, part one, 1995 JaniceÂ’s story bears some resemblance to that of Ry an, but she was 10 years older then he when she was diagnosed, therefore her guilt deals more with her not fulfilling what she thinks is expected of her as a wife, daugh ter, sister, and professional woman. There are two stories being told in her autobiograp hy: her own battle with AIDS and that of her husband, Bill, who also had AIDS. As the qu ote above shows, her life was cut
64 tragically short by her diagnosis with AIDS. The a nalysis to come will look at her guilt at being a normal person with a terminal sexually t ransmitted disease. One might wonder at the title of JaniceÂ’s book, SarahÂ’s Song. Sarah is the name Janice and Bill would have given to their daughter, had they been able to have one (Burns, 1995). However, since in 1987, women were told not to attempt to have children when infected, Janice did not pursue the option of having a child. This is where her first battle with her guilt begins. Once again, hierarch ies are created by the negative, by Â“thou shall notsÂ”. By her doctor telling her that she s hould not have children, she has been placed low on a hierarchy that has great meaning to her: motherhood. In a brief chapter she explores her inability to have children, and sa ys she can hear her ovaries scream (Burns, 1995). Â“My ovaries are probably shriveled and mangled by now, eaten through with foreign chemicals and mutating cells. And if they still live, they could be lethalÂ” (Burns, p. 17, 1995). The language used to describ e her reproductive organs shows her anger at the betrayal of her body. Ironically, thi s part of her body that normally created life was the reason hers was ending. Now, her abil ity to create life is lethal, dangerous, or risks spreading the virus to a baby. In additio n, Janice also states that when she saw Bill with children, it made her want to have his ch ild right after marriage, but now neither one can do so. While this story is not told from B illÂ’s perspective, this alludes to the idea that he too feels the loss of not being able to hav e and raise a child. The text creates a feeling of great sadness to know that Janice and Bi ll not only have to deal with their own mortality, but also that of a child never to be. Janice begins her narrative by describing herself a nd Bill:
65 I am a white, married twenty-four-year-old woman wh o lives in Yonkers, New York. My husband and I earn 67,000 a year and spen d most of it on vacations and home furnishings. We love to eat out, go to Br oadway shows, and shock people by revealing the liberal outlooks that hide under our conservative exteriors. We call each other Â“boobyÂ”Â….we will never have chil dren. In October, we will celebrate our third wedding anniversary; we have kn own each other for five years. We are HIV-positive. (Burns,1995) Until the last line, this couple could represent ma ny in the United States. They are young, educated professionals who spend money liber ally. While this paragraph attempts to create identification, it also shows JaniceÂ’s fe elings about her life and her status. There is nothing exceptional or different about them. Wh y, then, are they infected with HIV? Why them and not another couple or someone who is g ay or does drugs? Janice and Bill should have a wonderful life ahead of them, but ins tead, this paragraph is the highlight of their lives together. At the same time, guilt is a lso created by the text in that people like Janice and Bill do not ordinarily become infected w ith HIV. It is a disease of drug users, homosexuals and prostitutes, not good, hard working Caucasian Americans (Alcamo, 2003). It happens to people society would label as being down or lower in status, not those who are viewed as being up or higher on the s ocial hierarchy. So, if it could happen to the Burns, could it not happen to others like them? Janice further explains that she and Bill are like many people who are positive, they come and go and yet are rarely noticed (Burns, 1995). More than likely, many do not want to notice these people. Janice then discl oses that she has been infected for two years and has yet to tell her parents. Her guilt h ere is obvious: she feels that her
66 infection will disappoint her parents, much like it does society, so much so that society does not notice who may be positive outside the sti gmatized groups. It is as though people like Janice and Bill cannot have AIDS becaus e that would mean others like them are at risk, too. In 1989, she does finally disclose her status to he r parents. When she states she has an announcement, her father, the Catholic deaco n, immediately asks if Janice has had an abortion. She replies no, that she and Bill are HIV positive (Burns, 1995). Instead of being rejected or blamed for her ailment as some en dured from family members early on in the epidemic, she received nothing but love and compassion from her parents. And no one asked how she had become infected. It is ironi c that her father should ask if she had an abortion, because JaniceÂ’s previous statements s how she feels as though her body has killed any chance of having a child with her lethal ovaries; in a sense aborting her opportunity to have children. However, this could also be interpreted as a hierarchy, that to some the murdering of a child, at least from her fatherÂ’s perspective, is worse than having HIV, a death sentence. Perhaps, as a way to ease her own guilt about havin g AIDS, Janice tells this story: She had been, after all, a prostitute and crack-he ad for three years and sold herself for drugs right up until the time she deliv ered her second child five months ago. Residents of her neighborhood spit at her whe n she passed, a disgusting addict who does not give a shit about her babyÂ’s he alth but only wanted to feel that expensive high, even if it meant fondling some syphilis-laden man. I kept thinking, sheÂ’s got to have AIDS. Wishing, yes, wishing that she didÂ…she does not. (Burns, original emphasis, p. 71, 1995)
67 The irony is that Janice, who had slept with two me n in her life, did have AIDS, but this woman who fit every negative stereotype about those who have AIDS/HIV, was negative. Janice wanted this woman to have AIDS, a s though it would vindicate or explain her own infection, but it did not. She, on the one hand, feels ashamed that she would wish her own plight on another, but at the sa me time it is not fair that this crack whore, whose life is perceived as being worth less than JaniceÂ’s is free of HIV. The hierarchy about the value of life is clear: a crac k-addicted whore who has sex right before childbirth with a man infected with an STD d oes not deserve to live. Despite realizing that there are those who do not fit the A IDS stereotypes, most people might agree that Janice should be the one who is negative Janice may not be the only one wishing, yes wishing that this woman were infected. Janice was infected because Bill had a short-term r elationship with a man when he was questioning his sexuality (Burns, 1995). Due to this, Bill feels a great deal of guilt for infecting Janice, although he did not find out he was positive until after they were married. Like a bolt of lightening for a brief moment illumi nates so violently, I remember countless examples of my irritability and self-pity my hostility unspoken but not unnoticed. I see my anger, anger, anger concealed behind the smile of a devoted wife. Until finally the words burst from his lips, unkissed by compassion for so long: I donÂ’t deserve to be loved. (Burns, p. 86, 1995) Evident in this quote is also JaniceÂ’s guilt about her anger toward the man she loves, but who also infected her. Bill feels as though he has murdered his wife, he has ended her life and therefore does not deserve her love. From the quote, it becomes evident that
68 Janice has not been giving him love and therefore h as led him to feel this way. Her guilt stems from her inability to see that he not only su ffers from AIDS but the knowledge that he gave it to her as well. But Janice is truly ang ry with this, and she feels ashamed for her anger and her lack of acknowledgement of his em otional suffering. This is a side of AIDS/HIV is that is not often seen, how the person feels who spread the infection. It may allow for feelings of sympathy for Bill as he d id not intentionally give her this death sentence, and as a result must deal with this angui sh. At the same time, the audience could be led to understand JaniceÂ’s feelings of ang er at Bill, and her desire to lash out and express this. Instead she internalizes it, preten ds that it does not exist and she is not upset. Janice does not tell Bill of her own guilt that she suffers because it was her initial rejection of him when they first met that gave him the shove he needed to find love with a man. Thus, Janice may feel that it is actually her fault that Bill became infected, and in turn she, too. However, in small ways, as seen abo ve, she makes him suffer. This provides an insight that AIDS/HIV is much more than a physical ailment; it is also an emotional one that creates feelings of guilt when t he possibility of infecting others exists. It also allows for feelings of anger and resentment toward the one who caused the infection. Bill is paying the ultimate price for h is sin; he is dying, but sadly, so is the love of his life. Thus far, the analysis has outlined JaniceÂ’s feelin gs of guilt about not conforming to the roles that she feels others want her to fulf ill: wife, daughter, would-be-mother, etc. However, Janice is in her early twenties when she i s diagnosed, and there is another role that she is failing at: a healthy young person. Th e physical breakdown of her body leaves
69 her ashamed. Not so much because Janice cannot do the things that other people her age can do, but rather because her body is terminal. R ueckert (1963) asserts that a sense of the unclean also leads to guilt and the need for pu rification. Janice fears disclosure, and while she can opt not to tell anyone about her cond ition, her body betrays her with the non-verbal signs of AIDS. Â“Anamorphosis: the deli berate distortion of an image so that it can be accurately viewed from only certain angle s or with special instrumentsÂ” (Burns, p. 65, 1995). This metaphor is an excellent way to look at HIV. Although the seroconverted, or positive, person looks healthy, the r eality is that under certain conditions, the truth about the person and the potential for il lness is there. This dichotomy between healthy and ill leaves Janice pretending to be some thing she is not. While with some she can be her true, non-healthy self, in her social ci rcles, she must pretend to be normal. Again, she fears disclosure because either there is a fear of stigma and rejection, or she fears that people will then begin to treat her as J anice with AIDS, and not simply Janice. Â“My left side is a war zone. Lesions on my ear and faceÂ—painful, disgusting, oozyÂ— spread, ripping my vanity to shreds. Friends look at me with newly acquired looks of fear and pityÂ…. I am tired of being the girl with A IDSÂ” (Burns, p. 113, 1995). Janice clearly wants people to look at her as they did pri or to diagnosis, but this may be the guilt that many with a terminal illness must endure. Burke (1969a) deals with the pollution of the body in what he has termed the demonic trinity, consisting of erotic, urinary and excremental. Foss, Foss and Trapp (2002) add that bodily functions, including sexual ones, are infused with negatives, as they are not discussed in normal, every day situati ons. One sign of physical guilt, then, is finding ways to discuss the unspeakable (Foss, Foss and Trapp, 2002). Returning to the
70 quote above where Janice clearly talks about the oo zing of her sores and the ripping apart of her vanity suggests her guilt because she talks about such grotesque breakdowns of the body. However, given her subject matter and her de sire to create an authentic portrayal of her life with AIDS, this unique forum allows her to do so in a way that could not be done otherwise. At the same time, these sores do r epresent the war, to use JaniceÂ’s own term, between her bodyÂ’s defense system and the vir us attacking it. This detailed depiction of the war zone also leaves a graphic ima ge in the mind of the reader, one that Janice can not hide from or cover with makeup, ther efore returning her to a state of feeling diseased, unclean and terminal. Bill dies before Janice. As a result, she also suf fers from survivor guilt. There was a part of her that wanted to die before Bill, s o that she did not have to live alone. Her whole life was with Bill, and once he is gone, she has no idea who she is in the world. This crisis of identity leaves her feeling alone an d insecure. Her future with AIDS is uncertain, yet certain. Janice knows she will die, but when is unknown. This lack of control over her body and her life leaves her feeli ng helpless and scared. She often dreams about Bill, and in some dreams she kills him by proceeding with surgery or not, or by removing a tube and allowing him to die in hi s own fluids. It was BillÂ’s fluids that infected Janice, so one could read into this that i n her dreams she is retaliating. But these feelings after his death leave her sad and upset. These dreams reflect her fear of still caring for him, and not having him around to care f or. They also show her own indifference to life and death. In the dreams wher e he is alive, she has a reason to continue with her life. But in the dreams where he has passed, it reminds Janice that her life is empty without Bill, and that she is metapho rically killing him again and again as
71 punishment for her current spouseless status. This guilt could also remind the audience that even though Bill infected Janice, he did not d o so on purpose, and she is suffering without him. Therefore, perhaps Bill got what he d eserved for sleeping with a man and then having a relationship with a woman. No amount of blaming will help Janice live any longer. JaniceÂ’s narrative is a complex one in that it is b oth a condemnation of Bill and a tribute to him. She does spend a great deal of tim e talking about his amazing qualities, but any time she discusses her illness, it is a rem inder that it was Bill who infected her. While this sharing of infection was not intentional it does not change the fact that underneath all of her compliments and accolades, th ere lays the dark truth. For example, Janice mentions that when he was younger, Bill was raped by a male neighbor (Burns, 1995). She may do this to alleviate her own guilt about her initial rejection of him and his turning to another man for comfort. Rape is no t the victimÂ’s fault, and therefore one could not blame Bill for being confused and for loo king for acceptance anywhere he could. Also, because AIDS was such a new disorder in the early 80Â’s, one cannot blame Bill for being careless. Yet, she also introduces the fact that, at the same time he was sexually experimenting, he had emergency surgery wh ere he received a blood transfusion. This is mentioned only once and may b e meant to question how Bill really became infected. But, as the narrative is told, it was Bill who infected Janice. This point is stressed over and over again, which leads one to wonder why Janice does not consider herself to possibly be the carrier. Perhaps she no t only feels guilt about her rejection of him, but maybe there is, at least in her mind, the possibility that she infected him. However, by misdirecting her audience, the focus is never placed on her own sex life. In
72 actuality, her past lovers are never mentioned. Th is lack of disclosure suggests another level of guilt that might create some doubt about t he veracity of JaniceÂ’s version of her narrative. Just because HIV is passed more easily through anal sex, does not mean it cannot happen during heterosexual intercourse. It did happen to Bill and Janice. In the chapters to come, Janice and Bill will find ways to purify themselves in both their own eyes and that of the audience, there by paving the road for redemption. But for now, BillÂ’s guilt comes from his past sexua l encounters and his infecting Janice. JaniceÂ’s guilt stems from all the roles that she fe els she will never fulfill, and from her own culpability in allowing Bill to have had access to a relationship that may have caused his initial infection. PedroÂ’s story is a bit diff erent, as it is equally about the writerÂ’s guilt and that of the protagonist. Pedro and Judd: Â“I never knew anyone with AIDSÂ” Winick, p. 2, 2000 Pedro and JuddÂ’s narrative has more in common with Ryan White than it does with Janice and BillÂ’s. They appeared on MTVÂ’s The Real World and for that reason were well known individuals who had the power to ch ange the image of someone with AIDS. But this story is also different than the ot hers analyzed because this comic book was about AIDS education. This may imply a feeling of guilt held by the audience, as it is assumed they did not know much about AIDS, and t herefore, required an education about the ailment. Judd and Pedro suffered from di fferent kinds of guilt, and the analysis of this portion of the narrative will explore JuddÂ’ s ignorance and PedroÂ’s homosexuality and cultural issues.
73 Although Judd is both the artist and storyteller of this narrative about Pedro, the one infected with HIV, on the front cover of the bo ok is a large picture of Pedro, followed by a smaller snapshot of both Pedro and so meone assumed to be Judd. As with Ryan White, both photos of Pedro show him looking l ike a healthy young man with his whole life ahead of him. This shows the guilt that Judd felt about his friendÂ’s ailment and untimely death. Although Pedro, too, was known for his life as someone with AIDS/HIV, he is shown looking healthy; as a matter of fact if one had not seen them on the Real World one would not know who was who in the smaller pic ture. Perhaps Judd is making the point that people with AIDS/HIV do no t look any different than everyone else, and might be asking people to confront their stereotypes. The first chapter of JuddÂ’s book is not about Pedro but about the man who drove the shuttle to the airport. This man could represe nt the inadequacy that Judd feels as he goes to see Pedro dying in the hospital. The wise shuttle driver tells Judd that he must return what has been given to him, that he must be the light that brings others up (Winick, 2000). There is a religious metaphor evident in th is message, about being the light of guidance for others who do not know or understand a nd need to be led. But, at the same time, this also expresses JuddÂ’s own inability to r epay Pedro for all that he has taught Judd during their brief friendship. As the book pr ogresses, Judd will en light en both himself and others about AIDS, and by doing so, rep ay Pedro for helping him to find himself. The first portion of the comic book is also about J udd: who he is and where he came from. These few chapters create an identifica tion with the reader, so that as one progresses through the comic book, Judd could repre sent the reader in the story and then
74 as the book ends, also purify and redeem him/her as well. Judd talks about hating school, but loving art and how upon graduating college, his dream was to be a syndicated cartoonist, like the creators of Doonesbury or Bloo m County. Initially, he did get a column, but not too long afterward, he was dropped. With no money and no prospects he was forced to move home with his parents. Judd is attempting to create identification by showing there was nothing exceptional or different about him. Although he called himself a liberal who was open minded, he had never been confronted with anything that challenged his way of thinking. Until he applied f or the Real World 3: San Francisco. Judd sailed though the initial screening process, w hich included submitting a photo of himself and providing a video of his perso nality. But it was when a face-to-face interview was conducted that Judd learned he would most likely be living with someone who was HIV positive. I gave them the safe, diplomatic answer: I donÂ’t k now anyone whoÂ’s HIV positive, at least personally So, that sort of life experience is something th at I am more than willing to learnÂ…. But what I was actu ally thinking was Jesus H. Christ! I am going to be living with someone who has AIDS! (Winick, p. 22, 2000, original emphasis) The guilt present in this quote is multilayered. O ne, Judd has claimed to be an open minded liberal, but his statement contradicts that identity, and this may cause him feelings of panic and chaos as he is forced to conf ront his own prejudices and stereotypes about those who have AIDS and the ailment itself. Two, the audience may also be confronted with this judgment, as many people may f ind that verbally they are accepting of issues until those issues become a reality; then they behave differently than they
75 thought they would have. JuddÂ’s honesty about his true feelings versus his politically correct stance allows that sometimes people are for ced to take a hard look at who they really are and what they truly stand for. Evidentl y, Judd answered the question correctly, because he was invited to become a cast member of t he show. The next portion of the comic book is about Pedro, and his life in Cuba. While Judd had everything, Pedro had nothing. Judd was n ot a happy child and Pedro was a very content boy. Judd paints the picture of Pedro as a blessed child. According to the religion of Santeria, he was born to save lives bec ause he was the seventh child of a woman who was told she would never have more childr en, born on February 29th of a leap year. Judd details this information as a way to set up why Pedro would always feel he had to push himself harder so that his message a bout AIDS could be heard. This may also explain PedroÂ’s fear that he was not doing eno ugh to help others. But, at the same time, it shows that those who come from little can make a big difference in the world, and that one does not need to feel bad if she/he comes from less. Burke (1966) states, Â“Those Â‘upÂ’ are guilty of not being Â‘downÂ’, those Â‘downÂ’ a re certainly not guilty of being Â‘upÂ”Â” (p. 15). Judd does not want the audience to label or judge Pedro for being poor, Cuban, or having AIDS. To help create a positive image of Pedro, he tells the story of how Pedro was a blessed child. This is not something t hat one would normally think of when describing someone who would later die of AIDS. Pedro was very close to his mother. When he was th irteen, she was diagnosed with, and later died, of cancer. PedroÂ’s guilt, hi s driving force became the memory of his mother and wanting to make her proud. This relatio nship is what gave his life meaning, made him excel in school, and helped him to decide to pursue a medical degree in
76 college. It was also the driving force that pushed him to look for love with all the wrong men. Being gay in the Latino community is consider ed unacceptable (Leiner, 1994). Pedro hid his true identity from his family. But h is father knew that Pedro was gay. He accepted Pedro, but warned that life was going to b e hard. JuddÂ’s inclusion of this portion of PedroÂ’s story shows how the expectations of both culture and family can make one feel as though he/she has to hide a true self. It also shows that Pedro felt guilty about of who he truly was and wanted to pretend to be lik e other young men his age. But PedroÂ’s fatherÂ’s acceptance sends the message to ot her gay men, Latino or otherwise, that one does not need to feel guilty about oneÂ’s true s elf. It was not easy for Pedro to come out, but he did. Sadly, not long after, at the age of 17, Pedro would be diagnosed with HIV. Perhaps as a way to deal with his guilt at being po sitive, Pedro gave a speech in front of his entire high school about AIDS/HIV and the truth of his own status. This would appear on the surface to be an altruistic mov e meant to help others avoid his fate, but underneath, the sharing of his status allowed P edro to alleviate his guilt at being diagnosed. Â“I am here to tell you that you should be very frightened of AIDS, not people with AIDS. I am not dying. I am living with AIDS. Living No one should or has to be where I amÂ” (Winick, pp. 56-7, 2000, original empha sis). The bolded words are that way in the text as well, and they too show PedroÂ’s feel ings. The emphasis on the word Â“veryÂ” in front of the word Â“frightenedÂ” could indicate ho w Pedro feels about the disease, not really how the audience might see it. In addition, by stating that one does not need to fear those with AIDS, Pedro is asking his audience not t o reject him because of his status, but rather to see him as they always have. Pedro clear ly states that he is not dying, but that
77 too is emphasized in a way that indicates his fear about the idea of death, and why he emphasizes living twice. By re-defining AIDS as so mething that one can live with, he is actually contradicting himself. If AIDS is somethi ng that one lives with, why does one need to be very afraid of it? This answer is found in the last line, when Pedro says that no one needs to be where he is, because regardless of whether or not AIDS is deadly, to Pedro having it is the end of his life. His guilt about having something wrong with him physically is perhaps worse than the fact that some will reject him and that he will eventually die from it. At this point in the comic book narrative, the stor ies merge as they both, with a group of other people, move into the MTV house in S an Francisco. For Judd, the big issue was trying to figure out which one of them wa s HIV positive. Judd looked for signs of the virus, and one of the cast had what looked l ike a purple lesion on his face, so Judd erroneously concluded that he was the infected one. Another cast member thought it was Judd. This physical stereotyping may have created feelings of guilt in Judd as he knew it was wrong, but could not help his curiosity. Rathe r than ask his cast mates, he made assumptions. Pedro, on the other hand, was afraid of what would happen when people in the house found out and how each would react. Alth ough Judd made the comment that he did not want to room with the sick person, he di d choose to room with Pedro, and that is when the truth came out. Oh. ItÂ’s Pedro. Pedro has AIDS. But just like th atÂ…. I was OK with it. I wasnÂ’t going to be living with HIV walking around on two l egs. I was going to be living with this guy who I spent two hours talking withÂ…an d I liked him. He was not someone to be frightened ofÂ…he was just Pedro. (W inick, p. 67, 2000)
78 Judd thought, as do many people, that those with H IV look like they are ill, which is not always the case. Judd thought this person would be different, someone to whom he could not relate or like. Pedro was no different than Ju dd, a young Caucasian man from suburban Long Island. This means that those with A IDS/HIV are not as different as some would like to think. This may create a bit of fear as some may begin to understand that HIV could have the same face as they do. In contrast to RyanÂ’s lack of details about AIDS, a nd more like JaniceÂ’s honest portrayal of life with the ailment, Judd details so me of the medical issues that Pedro endured. Judd details them because they serve as a powerful tool of persuasion to encourage others to never find themselves in the po sition of contracting HIV. But for Pedro, these symptoms are a betrayal of his young b ody. These tie back into BurkeÂ’s idea of the demonic trinity, where the body is poll uted and certain word choices lead to a purging of that pollution (1969a). However, while Burke was detailing more metaphorical uses of the demonic trinity, it also h as application to the literal body. In this case, Pedro had to deal with shingles, also called Herpes Zoster, which is related to the chicken pox virus (Langone, 1991). Judd explains Â“ itÂ’s a little like chicken pox but 100 times worse. Scabs breakout in huge bubbly patches They are extremely painful and physically repulsiveÂ” (Winick, p. 51, 2000, origina l emphasis). The depiction of the huge bubbly scabs creates the image of oozing, and withi n that ooze would be the pox virus, but it is non contagious. This is the body purging the pollution from the inside to the outside, but because of the depressed immune system the purging of the virus does no good. PedroÂ’s shame at having such visible evidenc e of illness is further stressed by JuddÂ’s choice of the term Â“physically repulsiveÂ”. These shingles were all over PedroÂ’s
79 face; therefore, Pedro is not only socially repulsi ve to some, but physically damaged as well. Shingles were not the only purging Pedro dealt with ; he also suffered from severe diarrhea. Again, this is not a metaphorical purgin g, but rather a physical response to the virus attacking his body. It is a symptom that man y with HIV as it progresses to AIDS must deal with, but Pedro did not know that there w as medication to control this parasite. For two years, Pedro thought this was something he had to live with until he told a physician about the problem, and a medication was p rescribed. PedroÂ’s silence about this condition indicates a fear of HIV and what the diar rhea might represent. It also exemplifies the dis-ease such a condition creates i n others when being discussed. In most settings, this is not an appropriate topic of conve rsation, but in this narrative it serves as a reminder that AIDS/HIV is a physical breakdown of t he body, and these excretions, whatever form they may take, are very important for the patient. It also served as a reminder to Pedro that he was lower on the health h ierarchy than his peers. Judd addresses PedroÂ’s fear and shame about the slo w demise of his physical body. He was living with AIDS. He wasnÂ’t sick. He could hold a job. He could fall in love. Be in a relationship. Do everything and any thing that anyone else could do. He wasnÂ’t going to be that sickly AIDS boy from MTV He was going to show them that you could succeed with AIDS and HIV. But he wasnÂ’t. It was a lie. Pedro was sick. (Winick, p. 113, 2000) To further this feeling of guilt, anytime Judd was asked while filming the show how Pedro was, he would lie and say Pedro was doing great. It is an indication that
80 neither one of them wanted to acknowledge the truth about PedroÂ’s condition. Neither one wanted to admit that Pedro was slowly dying fro m the inside out. Judd wanted him to be the one to beat this or to live ailment-free for decades, but that was not the case. Had Pedro admitted on the show the truth about his condition, it would have undermined all that he was trying to do, which was prove to ot hers that one could live with, not die of, AIDS. It was his one goal, and to him failure was not an option. So, it was hidden. Pedro was willing to sacrifice what little of his h ealth he had left to help others see AIDS/HIV differently. Right after the show stopped taping, Pedro had laps es in memory, and was eventually diagnosed with Toxoplasmosis, a type of brain infection that can be treated (Winick, 2000). It was later discovered that his T -cell count was 32, which meant he had finally progressed from HIV to AIDS (Winick, 2000). A diagnosis of AIDS comes when one has had a bout with one of the twenty-nine oppo rtunistic infections chronically (30 days or longer) and a T-cell count of below 200 (Ga rrett, 1994). Even HIV and AIDS have their own hierarchy of illness. A healthy per son has a T-cell count of 1000 or more. Someone with HIV can have the same or lower until t hey progress to AIDS, and are 200 or below. So, the higher the T-cell count, the les s one has to worry about having AIDS, the lower the T-cell count, the more one has to wor ry about death. Even if someoneÂ’s Tcells did rebound to above 200, and the opportunist ic infection went away, that person is never UN-diagnosed with AIDS (Garrett, 1994). PedroÂ’s T-cell count of 32 and his diagnosis with t oxo meant that he had AIDS. Prior to this, Judd was detailed about PedroÂ’s ailm ents, because they just meant that his immune system was weakened, but not destroyed. Now Judd becomes vague about
81 PedroÂ’s appearance as he slowly dies. Even in the pictorial depictions of Pedro, he never looks any more ill than he did with HIV. Judd may do this to alleviate his own issues with PedroÂ’s slow demise and ultimate death. He do es not want Pedro remembered as an AIDS patient, but rather as an AIDS activist. And of course, this too is how Judd wants to remember him as well. In the last drawing of Pe dro as he passed, Judd has the background painted black, signifying death, but Ped ro is contoured in white, and it actually looks like he has wings and is floating up to heaven. This suggests that Judd needs to believe that Pedro has risen up to a bette r place, a place with no pain, no blame, no guilt and no terminally ill, 22-year-old, gay La tino men. Judd wants a certain image of Pedro to remain, and it is not that of one who s uffered. Since most people tend to be curious about how peop le with AIDS/HIV become infected, Judd addresses this issue. This could al so be the source of PedroÂ’s major guilt. He was a young gay Latino man. After his motherÂ’s death, he needed to fill a void in his life and he turned to older gay men for the love he lacked. They did not teach him how to protect himself, so he decided when he found out he was positive, to educate others as a way to alleviate his own anger at those who did not care enough to use protection with him. Â“Our sex, our sexuality, our person belongs t o us. No one can or should make you do anything you do not want to absolutely doÂ” (Winick, p. 99, 2000, original emphasis). The language Pedro used here, taken from one of his lectures, shows his feelings of betrayal at those he thought cared about him. It a lso shows his attempt to empower his audience to say no to sex that feels wrong, emotion ally or physically. Obviously, he did not feel empowered when he was younger. But it als o makes it sound as though Pedro might have been taken advantage of, which creates a different picture of his infection.
82 Judd and PedroÂ’s stories are meant to educate about AIDS/HIV, those who have it, and those who do not and do not understand. Ju ddÂ’s very honest portrayal of his feelings about HIV, before and after Pedro, allow f or the alleviation of certain feeling of guilt at being ignorant or stereotypical about AIDS /HIV. PedroÂ’s drive was to prevent further infection and he did so through his lecture s and JuddÂ’s detailing of his life and death. JuddÂ’s depiction of Pedro as being the spec ial one he was born to be also alleviates any remaining feelings of shame that he might have had about sharing the way he felt about AIDS before his own education. His c ontinuation of PedroÂ’s lectures also speaks to his drive to live up to PedroÂ’s memory. In the next chapters, more detail will be given to how they both purify and redeem themselves In the next section, a new perspective on what it means to have AIDS will be e xplored. Roger and BobÂ’s medical guilt: Â“I believed I had discovered the underlying cause o f AIDS: Abusive life stylesÂ” Owen, p. 161, 1997 As one can tell from the quote, RogerÂ’s narrative i s markedly different from the other three. This story subscribes to the dissiden t view of AIDS/HIV explored in detail in chapter two. Roger is the AIDS patient, and Bob Sm ith is the medical doctor who not only treated the condition, but allegedly cured Rog er as well. Although the stories are different in premises, they still deal with the phy sical and emotional guilt attached to a diagnosis of AIDS/HIV. This last section will expl ore RogerÂ’s medical issues and BobÂ’s identity crisis as he questions all he has been tau ght about medicine. One interesting point about this story is that Dr. Bob, M.D. nor Roger, M.D wrote it. The author of the book is actually Dr. Bob Owe n, PhD, and D. Sc. This may cause a
83 bit of confusion as both protagonist and author are called Dr. Bob. There is an authorÂ’s note at the beginning of the book where he remarks on the ten-year anniversary of RogerÂ’s story, but the entire narrative is written in the same language, same voice, so it is hard to know there is a difference between the Bobs The narrative is allegedly written in the M.D. BobÂ’s first person voice. This in an impo rtant fact because the dissident view is controversial and not accepted by mainstream AIDS r esearchers (Alcamo, 2003). In the hierarchy of academia, a medical doctor discussing medical research would be seen as more valid and authentic than a PhD hypothesizing a bout the same issue. This is not to say that one is more correct than the other, but so me of the claims that are made in this narrative are medical, not theoretical. This confu sion between the protagonist and author could indicate feelings of guilt held by the true a uthor because of his lack of a medical degree, and therefore, might weaken his voice in th e matter. In order to be persuaded to accept that Roger was truly cured of AIDS, some may want scientific and medical proof, not theories that these ideas may or may not work. This leads one to question if the medical Dr. Bob is OwenÂ’s more valid medical muse. Roger and Bob were good friends in medical school a nd became even better friends when they went to Vietnam together. They h ad parted ways upon returning stateside, and the first time Bob saw Roger again w as when he came to Bob for help with his diagnosis of AIDS. He knew he was going to die and was looking for Bob to ease his pain and make his transition easier. Roger sol d his thriving practice in San Francisco once he became too ill, sold his home and moved to Los Angeles basically to die. Â“One day I said to myself, IÂ’ll see if old Doctor Bob Sm ith can figure this thing out. SoÂ…here I am, Dr. IÂ’m in your hands. See what you can do. Okay?Â” (Owen, p. 4, 1997). It is
84 evident that Roger cannot take care of himself, des pite the fact that he, too, is a physician. This shows his frustration, shame, and his realizat ion that he needs the help of someone else because his body is betraying him. Dr. Bob fe els his own guilt because while he had read about AIDS, he was not as educated about it as some doctors. In order to make him feel better about this lack of knowledge, Bob state s that as a general practicing physician, Â“ I was quite generally interested in all phases of medicine, but more specifically conversant with the subjects more relevant to my pr acticeÂ” (Owen, p. 7, 1997, original emphasis). Bob is setting the stage for his navet when it comes to anything AIDS related, and yet also stressing that he knew a grea t deal about many other medical subjects. This is a reinforcement of his own knowl edge and gives him an out for not knowing much about the ailment. While the narrativ e never gives an exact date of when this reunion occurred, hints peppered throughout th e story suggest it was before 1986, when not very much was known about the syndrome. The narrative suggests that Roger became infected v ia IV drug use. It appears that this drug use began as a coping mechanism to d eal with the atrocities of the Vietnam War and segued into a way to cope with life after t he war. Â“For a while after Â‘Nam I was still shooting up. I had to, Bob. I was sick. I donÂ’t think I ever got over Â‘NamÂ” (Owen, p. 45, 1997). RogerÂ’s guilt stems from what he thi nks is his own moral failure leading to his drug use. The language and its inclusion in th e text reveal the fear that both protagonists have about blaming Roger for his curre nt medical condition. By stating that Roger had fought in a war is a way to shift blame a nd to paint him as an innocent who became an addict as way to cope. This addiction, a betrayal of his body, also led to his infection with HIV, another failure of his body. D r. BobÂ’s occasional comments about
85 Roger looking nothing like the man he knew in Vietn am is also an indicator of the physical demise Roger has suffered. The key here i s that Roger is dying, and he needs BobÂ’s help to save him, which translates into BobÂ’s feelings of impotence over saving a life which, according to the medical literature at the time, was doomed. Bob does not know how to save Roger. He turns to t he literature, and it provides no answers. He turns to fellow physicians, who are also without answers. The traditional medical establishment that he has trusted is lettin g him down. This guilt appears to motivate him to look for information anywhere he ca n find it, which leads him homeopathic medicine. The narrative shows this ten sion as Bob struggles to believe that the answer may not be in traditional medicine, but in an outside view. I am not entirely sure why, but I didnÂ’t tell anyon e at the hospital the next morning about Dr MendelsohnÂ’s book. Perhaps I was ashamed to have read something so derogatory to my chosen profession. P erhaps I was fearful that some osmotic process might also brand me as a heret icÂ…. Maybe I had become the kind of doctor they warned me about in medical school: The Doctor whom patients regarded as God until the doctor himself b egins to believe and act as though he actually were God. (Owen, p. 43, 1997) Bob is struggling with his faith in medicine and th e fact that one book written by a medical heretic could cause him to question that fa ith. He has to believe that for all the years he has been practicing, he has done some good for his patients. At the same time, he worries that maybe he was doing what he was trai ned to do, and not thinking about the specific needs of each patient. RogerÂ’s diagnosis of AIDS has caused him to look for answers that only the heretics seem to have found.
86 The first seeds of conflict cause Bob to feel uncom fortable. He describes RogerÂ’s diagnosis with AIDS as a puzzle where traditional s cience has provided most of the pieces, but not all of them. As he finds ways to c reate the pieces that will fit, he has to rationalize his departure from medicine. One such departure is his discovery that drug abuse, like RogerÂ’s addiction, could be a cause of illness. This is something that traditional medicine supports. By the same token, Bob feels that all drugs, including prescriptions, will cause the same breakdown of the immune system found in AIDS patients. Â“AIDS does not destroy the immune syste m. But, a weakened immune system falls prey to a combination of symptoms we call AID S! AIDS is the result of an already non-functioning immune system caused by abuseÂ” (Owe n, p. 64, 1997). As a way to deal with his guilt of not being able to save his friend from AIDS, Bob has created a new definition of the ailment, one that implies that an yone can become infected, whereby RogerÂ’s guilt at having AIDS is also alleviated. D espite this new way of looking at the syndrome, Bob is still grappling with the piece of the puzzle that will lead to a cure or remission at least. Discovering that abusive life styles break down the immune system is good news for the healthy, but does nothing for tho se who are ill. Bob has replaced one guilt with another for now he must find a way to tr anslate his new theory. Roger became BobÂ’s medical guinea pig. He moves in to BobÂ’s house and is put on a fast, where he is only allowed to drink fresh fruit and vegetable juices. Bob believes that this will remove the toxins caused by RogerÂ’s former abusive lifestyle. But it is not as easy as it seems, and after a few days Roger is very ill and in great pain. BobÂ’s first inclination is to prescribe pain killers to ease Ro gerÂ’s suffering. But he realizes that this is what doctors have been doing for years, making p atients feel better, but not really
87 healing them. On the one hand, he feels horrible w atching his friend suffer, but on the other he knows that writing a prescription will cau se him a different kind of pain. BobÂ’s conflict is evident, and the end result could be Ro gerÂ’s death. The solution to this problem is to put Roger in a warm bath and let his body work it out on its own. Despite making the right choice this time, the reader can s ee how very guilty Bob feels about his own ideas. Â“ I am really new to this, and everythin g is a challenge and a riskÂ” (Owen, p. 130, 1997). Making the wrong decision will kill Roger, and even though Bob is beginning to see the light, there is much doubt and little faith in his choices. For the first time in his medical career, he is impotent against the breakdown of the body. The knowledge that he has complied over the years appea rs to be irrelevant. Perhaps to persuade himself, Bob begins to question the epidemic of AIDS in relation to other major medical conditions. Pullin g sources from such prestigious journals as the New England Journal of Medicine, Bo b analyzes the data about cancer. In one article, it states that much progress has been made in treating cancers of all kinds (Owen, 1997). Yet, in another article it states th at the war against cancer is being lost (Owen, 1997). Also, AIDS is being called an epidem ic; whereas, cancer and heart disease were killing more people each year than AID S had in its first five years. BobÂ’s defensive position appears to be a persuasive tacti c meant to question the validity and credibility in his claims about challenging the med ical system. It also, however, shows that he needs to reinforce his own beliefs with aut hentic research from respected physicians. Bob is willing to see the faults with traditional medicine, but at the same time he worries that his new views may not hold the righ t pieces to the puzzle. In addition, he greatly fears the backlash from his medical peers s hould they discover his treasonous
88 thinking. At the same time, Bob is allowing for do ubts about traditional medicine and the unknowns of holistic thinking. It is as though he uses himself as a way to walk through these fears. It is not an abrupt change, but gradu ally using resources to support his medical ideological changes. Although BobÂ’s thinking has become more holistic, h e is still treating patients with traditional medical techniques. This upsets h im because Bob feels he has done more harm then good. As a result, he decided to stop pr escribing medications to his patients. Â“A few of my patients appreciated my efforts. But not many. My partner indicated that some of my patients went to see him because I refus ed them treatment. Maybe I should have humored them, but it is more and more difficul t to treat them in ways that I know are not in their best interestsÂ” (Owen, p. 132-3, 1 997). This quote shows the guilt that is on going with Bob and his medical epiphany. Instea d of seeing him teetering back to traditional medicine, one can see him on the side o f less traditional approaches. On the one hand, he does feel bad for not treating his pat ients. He is, after all, a doctor and based on his constant struggle to find the best way to help others, he appears to care a great deal about his patientsÂ’ long-term care. But on the other hand, he fears that his past treatments will do more harm than good. Therefore it is better for him to let them go, knowing they will most likely seek treatment elsewh ere, than to willingly prescribe medications that he believes will hurt them. Once Bob has accepted his new, non-traditional view s of healing, he no longer struggles with the decision. Rather, now he feels badly for not having had this information in the past. However, there is a new f ear to deal with, and that is the repercussions from traditional medicine.
89 When doctors disagree with AMA standards of medicin e and thus violate their accepted procedures, the AMA, the federal Drug Admi nistration, the National Cancer Institute, and other agencies go after themÂ… they harass the man until he comes into line. If he does not get the message, t hey take him to court and close him down. Or, even worse. (Owen, p. 186, 1997) Although the ones who should feel guilty about thi s practice are the traditional medical establishments listed here, it is Bob who now worri es about the repercussions of saving a manÂ’s life. Since Bob tried unorthodox methods, he is now seen as a medical heretic. This most likely has two effects. One, Bob feels a mazing for being validated and for saving his friendÂ’s life and the lives of countless others. Two, Bob still retains an attachment to his longtime profession and feels inv alidated because they will not recognize the enormity of his achievement, regardle ss of how it came about. He is no longer in the Â“in-groupÂ” but now will be seen as a quack. Therefore, his research and findings will be ridiculed and dismissed. This is another source of guilt Bob must deal with, because even though he found alternative mean s to Â“cureÂ” AIDS, he still wants to be legitimized by the establishment. It could be argued that the fact this book is written in such a way as to show his gradual shift in think ing and how well documented his sources are is also an indication of wanting affirm ation from his peers, the same oneÂ’s whose ideals he rejected. When asked if he was goi ng to go public, Â“No. Not at all. In fact, I do not want to even hint at any advertising campaign. If people with AIDS come, we will treat them. If they come with other sympto ms, we will treat them with our new knowledge as wellÂ” (Owen, p. 188, 1997). The irony of course, is that this book is the
90 best campaign. Evidently Bob felt that to keep sil ent was like murdering those who did not know the truth about traditional medicine. Perhaps as a way to validate the authenticity of th e narrative, there is an afterword written by Roger, the man now Â“curedÂ” of AIDS. In this brief essay, he states that he has never been healthier and never been more disappoint ed in traditional medicine. Evidently, many great doctors have tried to preach the benefits of holistic medicine only to be shut down by the traditional medical establis hment. For this reason, Dr. Bob and Roger have moved to Africa where they can do more t o help people without the bureaucracy found in this country. His fears are e vident; the readers of this book will wonder why they have never heard of this miraculous cure. Roger addresses it by saying that those who need to find this story will do so, and there is no need to go public. A skeptic might find that they do not want to go publ ic because the data would be carefully analyzed, including whether or not Roger ever reall y had AIDS in the first place. While Roger is offering a plausible reason why this story is not a familiar one, it also shows his fear that the story will be dismissed. After all, if he and Bob truly want to save lives, it would seem they would want to get the word out to m ore than just the readers of the book. At the beginning of the book, it is clear that Dr. Bob feels traditional medicine is Â“upÂ” on the social hierarchy. He even calls one of the non-traditional books he read medical heresy. But, as the book progresses and as Dr. BobÂ’s thinking expands, he begins to move established medicine farther down th e ladder, until, at one point, it is equal to that of unorthodox medicine. At the end o f the narrative, traditional medicine is portrayed as being lower when Bob states, Â“If there is a hell, those who have reaped their
91 pound of flesh from the agonized cries of the livin g dead should be mummified in their money and forced to suffer foreverÂ” (Owen, 1997, p. 183). This language is very descriptive. The irony is that, at one point, Bob was guilty of the same sin. But, because Bob challenged the traditional views and took a ris k, he has risen above those who would cause Â“the agonized cries of the living deadÂ”. In addition, Roger has risen above, so much so that he could no longer work in this countr y, and went to a place where he and Bob would be free to save lives. The picture paint ed of traditional medicine is quite negative. The picture portraying those who would g ive up everything to save patients is extremely positive. Roger and BobÂ’s narrative is pedagogical in a diffe rent way than the other narratives are. It still educates about AIDS in sm all ways, but this text is a redefinition of what AIDS is and what it is not. In addition, trad itional medicine is greatly questioned in this book; thereby, creating discomfort for the rea ders as they try to process the legitimacy of what is being stated. In the chapter s to come, Roger and Bob will find interesting ways to blame traditional medicine and to find redemption in a new way of thinking. Chapter summary The purpose of this chapter was to define the concept of guilt, as proposed by Burke and others. To further the understanding of guilt and its application to rhetoric, a few examples were provided, followed by the analysi s of the four texts about AIDS/HIV chosen for this research. AIDS/HIV is an unusual m edical condition, as it may be contracted via at fault behaviors or by accident. Despite the method of infection, based on these four texts and the analysis provided, it a ppears that these people with AIDS/HIV
92 do feel guilty about their status. This is evidenc ed by the descriptions of the ailment, the shame at being ill with a moral, terminal ailment, and the issues of identity created once one is infected. The uses of identification are an other indicator that the authors/protagonists need to be redeemed and to fin d ways to alleviate their guilt by showing how normal and like everyone else they are. Perhaps there is also a message to those who would judge these people, because none we re in high-risk categories at the time they were infected. The reminder is that AIDS /HIV can happen to anyone who needs a blood transfusion, who has unprotected sex or who has shared a needle. Even now, no one is really safe from infection. However the protagonists believe they need to find a way to rid themselves of the guilt they feel about their condition. In the two next chapters, these protagonists, through language, wil l attempt to ease their guilt by purifying themselves, by victimage or mortification (blaming others or themselves), and in the end will find redemption from the fault that society has placed upon them.
93 Chapter Four: Purification through Victimage and M ortification Receiving a terminal diagnosis causes an individua l to experience great emotional upheaval. Alcamo (2004) explains that most patien ts experience the five stages of grief as put forth by Kubler-Ross: denial, anger, bargai ning, depression and acceptance. Having AIDS/HIV complicates these stages because ma ny may stay in the denial stage while asymptomatic. These stages will only be addr essed once the person becomes diagnosed with AIDS. Being HIV positive is a compl icated social condition because of the stigma attached to such a diagnosis, as there i s a feeling that the person infected has done something to deserve their fate. The previous chapter addressed the guilt felt by four individuals who were positive. To rid themsel ves of this guilt the protagonists must now purify themselves, which will ultimately lead t o the last stage of the drama: the redemption itself. AIDS/HIV has become a social condition as well as a physical one. For that reason, BurkeÂ’s (1969b) modes of purification allow for the HIV positive individual to cope with this guilt. There is both a psychology o f having AIDS/HIV and a sociology of a society that is struggling to come to terms with the implications of HIV. This ailment, more so than more traditional terminal diseases (e. g. cancerÂ…), is not only about the physical demise of the body, but the social demise of the person infected due to the fears and misconceptions that others may have about this virus. The language of BurkeÂ’s (1969b) purification allows one to understand why t he patients who are infected feel this
94 social demise, for victimage (scapegoating) is soci al, and mortification is psychological. This chapter will explore, in detail, how Burke and others define the purification aspect of the redemption drama, followed by an analysis of the four narratives. Burke (1984) offered that people need to find a way to alleviate guilt once it has been identified through language. One way to do th is is through the act of purification, which comprises two possibilities. One is victimag e, or scapegoating, whereby another or others are blamed for the act in question. The other is called mortification, or selfsacrifice. Burke (1973) explored the idea of the scapegoat in great detail, applying this idea to Hitler and his portrayal of the Jewish people as the cause of GermanyÂ’s fall after World War I. One interesting component of the scap egoating process is that it unifies people, creating a feeling of identification, in gr oups who might normally be divided, by shifting focus to a Â“vessel of evilÂ” (p. 40). One reason for creating a scapegoat is so that some can place their sins on another, thereby shift ing attention off of themselves and their own flaws. Burke (1973) explains the term in a very detailed definition. Since the symbolic transformation involves a slough ing off, you may expect to find some variant of killing in the work. So we ge t the Â“scapegoatÂ”, the Â“representativeÂ” or Â“vesselÂ” of certain unwanted ev ils, the sacrificial animal upon whose back the burden of evils is ritualistically l oaded. This vessel, delegated to the role of sacrifice, must obviously be Â“worthyÂ” o f sacrifice. A few basic strategies for making him so must be listed: (1)He may be worthy legalistically (i.e. by making him an offender against legal or moral justice so that he Â“deservesÂ” what he gets ).
95 (2)We may make him worthy by leading towards sacrif ice fatalistically (as when we so point the arrows of the plot that the audienc e comes to think of him as a marked man, and so prepares itself to relinquish hi m). Portents, auguries, meteorological omens and prophecies have regularly been thus used for functional purposesÂ—while transition into the sacri fice may often employ an intermingling of this second kind of worthiness wit h the first, as when the Greek dramatists reinforces the fatalistic operatio ns with a personal flaw, hubris punishable pride, the pride that goes before a fa ll. (3) We may make him worthy by a subtle kind of poet ic justice, in making the sacrificial vessel Â“too good for this worldÂ” hence of the highest value, hence the most perfect sacrifice. (p. 40) For Burke, then, there is more than one way that a person or representative vessel can be victimized or scapegoated. The person can b e seen as a criminal, as thinking he/she is better than everyone else, or society see s the person as being too good for this world and needing to be released to go to a better place. Furthermore, Burke (1989) adds another set of characteristics explaining what it m eans to victimize; Â…victimage extends the range of those manifestation s far beyond the areas ordinarily so labeled. Besides extreme instances l ike Hitlerite genocide or the symbolic Â“cleansingsÂ” sought in wars, uprisings, an d heated political campaigns, victimage would include psychogenic illness, social exclusiveness (the malaise of Â“hierarchical psychosisÂ”), Â“beatnikÂ” art, rabid par tisanship in sports, the excessive pollution of air and streams, the Â“bulldozer mental ityÂ” that rips into natural conditions without qualms, the many enterprises tha t keep men busy destroying in
96 the name of progress or profit the ecological balan ce on which, in the last analysis, our eventual well being depends, and so o n. (quoted in Gusfield, 1989, p. 280-1) Basically, Burke is stating that a scapegoat can be made of anyone who threatens society or the way of life of a society, including the enti re human race. While there are times when others point the finger of blame, there will b e other instances where a person will internalize responsibility for an event. This is w hat Burke defines as mortification. Mortification (Burke, 1970) is where the person in question accepts the blame for a certain failure or feeling of guilt. This is a s ymbolic slaying of the self, although it could also be a literal one in certain circumstance s, such as the act of committing suicide. The self-sacrifice is done when there is no other t o be punished; therefore, a self-sacrifice is made for the good of others. Burke (1970) furth er adds to this term The derived meaning (humiliation, vexation, chagrin ) would figure here. But mainly we have in mind the Grand Meaning, Â“subjecti on of the passions and appetites, by penance, abstinence, or painful sever ities inflicted on the body,Â” mortification as a kind of governance, an extreme f orm of Â“self-control,Â” the deliberate, disciplinary Â“slayingÂ” of any motive, f or Â“doctrinalÂ” reasons, one thinks is unruly. In an empathic way, mortificatio n is the exercising of oneself in Â“virtueÂ”; it is a systemic way of saying no to Diso rder, or obediently saying yes to Order. It must come from within. The mortified mu st, with one aspect of himself, be saying no to another aspect of himselfÂ— hence the urgent incentive to be Â“purifiedÂ” by Â“projectingÂ” his conflict upon a s capegoat, by Â“passing the buckÂ” by seeking a sacrificial vessel upon which he can v ent, as from without, a turmoil
97 that is actually within. Â“Psychogenic illnessÂ” wou ld occur in cases where one is scrupulous enough to deny oneself such easy outgoin g relief, and instead in all sorts of roundabout ways, scrupulously circles back upon himself, unintentionally making his own constitution the victim of his hiera rchically goaded entanglements. (p. 190-91) Perhaps a clearer way to define these terms of pur ification is that the victimage of others is a symbolic homicide (scapegoating) and th at the victimage of oneÂ’s self is suicide (mortification) (Burke, 1970). Rueckert fu rther explains that there are two types of scapegoats: Â“the polluted agent who is sacrifice d because he is polluted and the unpolluted agent who is sacrificed because he is no t pollutedÂ” (1963, p. 146). In victimage the pollution then must be transferred to another. In mortification, nothing is transferred, but rather the guilt is internalized. Foss, Foss and Trapp (2002) add to this that when being scapegoated victims can be driven away, marked or defiled. Hitler did this with the Jewish people when he sent them to camps away from the Â“cleanÂ” German people ( Burke, 1969). In addition, in order for one to be victimized, that person must al so represent some of the elements of the victimizers. This means that the person being blamed must have some of the same qualities as others, but yet possess attributes tha t are different as well. Identification is then created between those who are united against t he common evil. Mortification is defined by Foss, Foss and Trapp (2002) as Â“self inf licted punishment, self sacrifice, or self imposed denials and restrictions designed to s lay characteristics, impulses or aspects of the selfÂ” (p. 197).
98 As a clarifying example, Bobbitt (2004) has analyz ed Martin Luther King Jr.Â’s Â“I have a DreamÂ” speech for its redemptive qualities t o show how KingÂ’s speech mortified African Americans and scapegoated some Caucasian Am ericans. In addition, they mortified themselves because they were an oppressed minority, and therefore, felt inferior and self hatred. King argued that to suff er was a virtue, and Black Americans had endured much pain. By using the techniques of non-violence, many Blacks could rise above their oppression and become morally supe rior to their oppressors. Their willingness to mortify themselves ultimately allowe d for their ability to attempt redemption. In another clarifying example, Brummett (1981) loo ked at speeches for their redemptive characteristics, but this time applied t he concepts to the presidential campaign of 1980. President Carter used mortification to st ress the economic problems of overconsumption and waste. In order to compensate for this guilt, one could be redeemed by using conservation and restraint. This would punis h the person by limiting their wants and desires the unnecessary. Reagan, on the other hand, scapegoated the Carter administration by stating that Americans should not have to restrain themselves, but rather look at the Democrats in office as the cause of the economic issues of the day. Reagan placed the blame for these issues on Carter, not the public. Reagan argued that redemption, in this case, could have been had by ch anging the party in power, not by curtailing behaviors (Brummett, 1981). A distinction must be made here between scapegoati ng and mortification. The term scapegoat implies that a vessel, person, or re presentative has been chosen to shoulder the blame placed upon them by others. Bla me is the vehicle, the language, that
99 allows the scapegoat to become or to be developed. More precisely, blaming is the verbal process, while scapegoating is the end resul t. Successful verbal scapegoating is achieved through the language of blame. The same i s true for mortification, the blame is the process of showing how the person mortifies, or kills the self symbolically. For the purpose of this research, when the term sc apegoat is used, it means that someone is being held accountable for something tha t others deem to be sinful or at fault behaviors. While a scapegoat is symbolic, which me ans that this person is described through certain characteristics, the scapegoat has to be something concrete, something that could be offered in reality as a vessel to car ry everyoneÂ’s burdens and sins. In these four narratives, the text creates scapegoats of tho se who: are ignorant about AIDS, use disparaging terms against someone who is HIV positi ve, do not protect themselves against initial infection or put forth false inform ation about AIDS/HIV and those infected. Mortification is a slaying of the self, and this could be killing, again through language, a piece of someoneÂ’s personality or givin g up something much loved. It is a self sacrifice, but it must be something concrete, something real, that is taken away. In these four narratives, mortification is based upon giving up certain freedoms and desires, having physical and emotional limitations, enduring risks to their own well-being, and making oneÂ’s own story available for public scrutin y. In either case, the use of blame is the tool that allows these rhetors to create the sc apegoat or the mortification needed for the ultimate goal of purification. The person in q uestion can, at times, be the scapegoat for society while simultaneously mortifying him/her self. In order for these stories to have an impact, they must first create a sense of identification. The texts must scapegoat the same people as the writer, otherwise that
100 vessel of evil will not be a foreign entity, but wi ll turn back onto the author/protagonist. This would occur because it would look like the pro tagonist or author was being vindictive in his/her portrayal of something or som eone, which would make this person seem petty. In addition, in order to recognize and appreciate the sacrifices that each person makes in telling his/her stories, one must s ympathize and agree that much was given up or surrendered by telling the narrative. Again, if the mortification is not perceived as being equivalent to the sacrifice, the writer/protagonist could be seen as wanting undue sympathy and be scapegoated for creat ing a negative and weak image of those with HIV. Therefore, the texts must be clear and detailed in their descriptions. This could lead to seeing how the innocent were sca pegoated and the potential good each person has done by writing her/her narrative, regar dless of the personal sacrifices involved. This chapter will explain how Ryan White was portr ayed as being at fault for his own infection with AIDS, and how he rejected this i dentity and mortified himself to provide AIDS education to others, even those people who would find him to be evil. Janice internalizes a great deal of responsibility for her bout with AIDS, but at the same time uses others who are infected as scapegoats for certain behaviors. Pedro and Judd mortify themselves prior to PedroÂ’s diagnosis with AIDS, and much like Ryan White, they mortify themselves through educating others ab out HIV and AIDS. Lastly, Roger and Bob clearly indicate that AIDS is a result of m edical practices used by most physicians today, and by rejecting the status quo, each sacrificed and risked their medical careers to save lives.
101 RyanÂ’s blame: Â“I was labeled a troublemaker, my mom an unfit moth er and I was not welcome anywhere.Â” White, 1992, p. 294 RyanÂ’s narrative comprised both types of purificati on (i.e. victimage and mortification) in that he was blamed by others for his infection with AIDS and he also internalized some of this blame. In this analysis of RyanÂ’s story, one will see the great lengths that others went to in order to make Ryan d ifferent, and how much this young man mortified himself to fight back. The first par t will explore how Ryan was scapegoated, followed by how Ryan transferred that back onto the people of Kokomo, Indiana. Then, the analysis will show how Ryan use d the techniques of mortification as a path to his ultimate redemption. Ryan received tainted blood through his Factor VII I, the blood coagulator he needed to survive (White, 1992). He did not engage in high risk behaviors. Yet, despite the fact that he was accidentally infected through a blood transfusion, there were those who blamed Ryan for his condition. Burke (1969) st ated that for a scapegoat to be worthy of sacrifice, that person or symbol must rep resent some kind of innocence. Referring back to RueckertÂ’s (1963) definition, Rya n was the polluted individual who was being sacrificed because of his pollution. In the previous chapter, AIDS was discussed as a form of guilt because the body is po lluted with a virus; so, in this case the pollution was not symbolic. Ryan was an innocent c hild; a sacrificial lamb who happened to be polluted. Therefore, he needed to b e cleansed and removed. The town of Kokomo did this by portraying him as different, and therefore, guilty. He was a part of
102 them in the sense that Ryan had spent most of his l ife in this little town, but at the same time he was just different enough to sacrifice for the greater good of the community. The townspeople wanted to keep Ryan out of school. They feared that he would willingly want to infect other innocents. Â“They do not want you back, Ryan. TheyÂ’re afraid that youÂ’ll infect the other kidsÂ” (White, 1 992, p.95). This implication creates an image of Ryan as dangerous and deadly. It paints a picture of an angry, uncontrollable boy who wants to inflict pain on other innocent kid s. At the same time, it makes the townspeople appear responsible and caring as they d o not want to put anyone in harms way. The fact that Ryan would want to return to sc hool and possibly risk infecting others further supports the image of Ryan as selfish and d eadly. Â“I had overheard someone say that I was a murderer because now that I was back, students were going to dieÂ” (White, 1992, p. 131). RyanÂ’s quote reinforces the parents Â’ fears that Ryan was evil and out to harm the good kids of Kokomo, Indiana. The implica tion was that Ryan did not care about others, only his own right to attend school. This is one way they made Ryan their scapegoat. Thus, the first step in scapegoating Ryan was to s how how uncaring he was about his peers. At the same time, who was considered in nocent was also being established. In case this was not convincing enough for some, rumor s began to circulate that Ryan was actively trying to infect others. Â“One day a kid f rom school called me up and asked why I spit and sneeze on the vegetables at the supermar ket? And also why I peed on the walls in the restroom and spit on people I was angry with Â” (White, 1992, p. 109). Since his peers needed to see him as different in order to in fuse him with the burden of all their sins, they portrayed him as vindictive and inhuman. What normal person would try to
103 spit on someone or pee on the walls of a restroom? In addition, this representation created an image of those with AIDS as wanting to r etaliate for being infected. This would then legitimize why people with AIDS needed t o be segregated from the people who were not infected. Ryan could not be seen as a normal young man, rather he had to be viewed as the enemy, and therefore, as someone w ho could not intermingle with the healthy. However, this defamation showed how frigh tened people were not only of AIDS, but the repercussions for treating Ryan in th is manner. If they could show that he was dangerous, the town would not be guilty of any wrongdoing, but rather praised for ridding Kokomo of a danger to its citizens. The defamation of RyanÂ’s character in the text is clearly an indication of a group of people placing blame on a worthy vessel. But in describing this event, Ryan too has unintentionally scapegoated the people who would ke ep him from going to school and who portrayed him as dangerous. The previous quo tes show how some people wanted to portray Ryan, but the quotations also serve to p ortray these same people in a very negative light by default, scapegoating the townsfo lk as well. Research (Alcamo, 2003) shows that one cannot Â“catchÂ” AIDS/HIV from casual contact. Therefore, the fear exhibited by the citizens of Kokomo is out of propo rtion with the reality of the situation. By presenting these feelings, Ryan attempted to cre ate an image of these folks as being irrational and hysterical. In doing this, he has a ttempted to create a bond with the reader of his narrative. The readers, based on the langua ge used, are more likely now to scapegoat the people of Indiana for adding to RyanÂ’ s suffering by intentionally portraying him as deadly, when in fact he was only a sick youn g man trying to live a normal life. RyanÂ’s detailing of how people wanted him out of sc hool, and ultimately his need to
104 leave the area, has the potential to make these peo ple look like cruel and ignorant townsfolk who offered up an innocent boy to the sla ughter. Since Ryan had already explained all about AIDS and its methods of infecti on, he had more to fear from the people of Kokomo than they did from him. By these irrational descriptions, one could scapegoat them for causing pain to those living wit h AIDS/HIV. RyanÂ’s text made him a perfect scapegoat since a c hild is usually seen as an innocent, and therefore, a perfect victim (Burke, 1 984). This also returns to RueckertÂ’s point about how they are blamed for their pollution and the unpolluted blamed for not being polluted (1963). Ryan serves both of these d efinitions. This brings the community together by focusing on Ryan. It also prevents any one else from becoming the scapegoat. But, this was not the case with RyanÂ’s family. Per haps because some felt guilty at scapegoating an innocent child, however ideal he wa s for sacrifice, some felt more comfortable blaming RyanÂ’s mother for RyanÂ’s condit ion. Hemophilia is passed from mother to son, so in the medical sense she is respo nsible, albeit unintentionally, for the condition that ultimately provided the virus a way into RyanÂ’s blood stream (White, 1992). But this is not what she was condemned for. Â“For instance, they had unusual theories about how I got AIDS. Mom hadnÂ’t fed me p roperly. She did not clean. She was a trashy housekeeper. WhatÂ’s more she was lyin g: She knew perfectly well that AIDS was infectious. HadnÂ’t she sent her own daugh ter away last summer?Â” (White, 1992, p. 112-3). This scapegoating of Jeanne, Ryan Â’s mom, is for the other parents who are worried about their own children. By defining activities that are seen as negative, other good moms can feel secure knowing that their children are safe because they are excellent housekeepers, or they fed their children properly, or they are honest with their
105 community members. This is an example of division. While Burke explores how the community can come together when blaming a victim, at the same time they must also separate themselves from that victim so that they d o not find themselves on the sacrificial chopping block (Burke, 1984). Thus, parents who lov ed their children, provided for them, and kept the house clean did not have to worry abou t AIDS. Jeanne was obviously an unfit parent as even her husband, RyanÂ’s biological father, had left her due to RyanÂ’s hemophilia. Along these same lines, Ryan appears to shift blame when it comes to his own battle with hemophilia. While his narrative does n ot pursue the option of attacking or blaming his mother for his condition, he does often refer to his hemophilia, rather than to AIDS (White, 1992). Perhaps this is because Ryan se es them as diseases on a continuum, each having to be dealt with in its own way. Howev er, this constant mention of hemophilia keeps this disease at the forefront of t he text and, as such, can then serve as the vessel of blame for RyanÂ’s current condition. Ryan makes a point of bringing up the person who donated the infected blood that ultimate ly gave him AIDS. I thought about that person, whoever he was. More and more, women and babies are getting AIDS, but back then I figured it had to be a man. Probably a drug user who needed money to pay for a fix. I certainly was mad that heÂ’d given infected blood that made me ill tooÂ….We shared the same bloo d and the same problem. He had changed my life foreverÂ…(White, 1992, p. 84) This is an indication that he blamed the infected blood for his condition. His text scapegoated the man who infected him, but makes the clear distinction that he did not feel that this man was homosexual, but rather a dru g user. By stating that the blood was
106 infected by someone who had a choice, Ryan may be s eeking to remove the stigma of gay AIDS and focus instead on drug users. This shi ft is very important, because many gay organizations actually provided Ryan with a gre at deal of education about AIDS, so to suggest the possibility would be to turn his bac k on those who supported him (White, 1992). This introduction of the donor provides a d ifferent scapegoat as well, and could remove the idea of blaming RyanÂ’s mom, because she could not have known that she would pass on the gene for hemophilia to Ryan. Ac cording to RyanÂ’s perception, the blood donor only cared about getting high. The lac k of discussion about AIDS itself suggests that to Ryan it is a byproduct of the hemo philia, and as such, the blame lies in the medical condition itself and the blood needed t o rectify said condition. Despite how they might have felt about AIDS, hemoph ilia, and blood donation, Ryan and his family were seen as the cause of all Â“ the townÂ’s problems with AIDS.Â” They were blamed for their own situation and ultima tely run out of town because they refused to back down. But this war cost the White family a great deal; they sacrificed much to pave the way for other AIDS victims. Rueck ert (1963) stated that mortification is analogous to committing suicide, or a homicide o f the self. Foss, Foss and Trapp (2002) state that mortification also includes self sacrifice and self imposed denials. RyanÂ’s younger sister Andrea was a well known rolle r skater at the time he became infected. Due to the nature and cost of his illnes s, RyanÂ’s mom could not take Andrea to meets or practices. As such, she was forced to giv e up her beloved skating. Â“Before I got AIDS, Andrea had been the famous one in our family. She was a national roller skating champion. I felt for Andrea. As far as she was co ncerned, our familyÂ’s whole life right now was about Ryan White, Ryan White, Ryan White. There was not much room left
107 over for herÂ” (White, 1992, p. 152-3). RyanÂ’s resp ect and admiration for his sisterÂ’s sacrifice is evident, but what is also clear is tha t Andrea felt that RyanÂ’s fight was worth giving up her own dreams. Andrea killed her own dr eams, denied herself her love of roller skating to show that RyanÂ’s health and well being were more important. Andrea was not the only one who engaged in mortific ation. RyanÂ’s mom endured a great deal of blame from others as well. In chap ter three, it was mentioned that she felt responsible for RyanÂ’s hemophilia and resulting inf ection with AIDS, and that this was a source of guilt for her. The fact that she dropped everything to support his fight to be readmitted to school and to be seen as a normal teen could also support her own inner conflict. Her statement at the end of the book mig ht also be her way of addressing her own need for purification. Jeanne had stopped livi ng her own life and adopted that of RyanÂ’s crusade once he had passed. Her dedication to AIDS research and funding for families was a way for Jeanne to continue RyanÂ’s li fe. Perhaps because she felt she had taken his life, Jeanne then devoted her own to carr ying on what Ryan had started: AIDS awareness and education. In fact, Jeanne states th at she never touched his room when he died, a further indication that she refused to live her life without him. JeanneÂ’s portion of the narrative shows that she might have committed s ymbolic suicide as her own life, her own dreams, her own goals, became those of RyanÂ’s o nce he died. Of course, Ryan paid the ultimate price. All he wa nted was to be accepted as normal and be treated like everyone else. But inst ead he felt a calling, a need to educate. This need put him in front of others who would judg e him or respect him: I knew I had to educate people. They kept imaginin g that AIDS was a dirty word, a slimy disease. If they saw me walking around, sh opping, looking normal, I
108 figured they might have more compassion for people like that. No one was really against me, they were against my disease. Parents were worried about their own kids. When I first heard I had AIDS, I was just li ke everyone in Kokomo, I was scared and so was my family. It was the adults who were controlled by fear. Many of the kids who called me names were only repe ating what they had heard grown ups say. Kids in Kokomo were only doing what kids were supposed to doÂ—listen to their parents. So, I thought instead of trying to change adults, who are set in their ways, I would educate and hang out with kids who could still learn. (White, 1992, p. 168-9) RyanÂ’s text has positioned him as one who can save the ignorant through education. Yet, he does so at his own peril and somewhat reluctantl y. Ryan never felt the urge to educate others about his hemophilia. But, once he was diag nosed with AIDS, he felt compelled, perhaps by guilt, to defend himself and by extensio n others suffering from AIDS. This self-sacrifice sends a message to the audience. H ere is a young teen that has the maturity to realize that people did not truly hate him as a person, but rather what he represented. This statement from the quote above shows RyanÂ’s ab ility to forgive, and so he pardons those who did not know the pain they were inflictin g upon him and his family. This is carried onto the ignorant, as then they are forgive n for any initial feelings or prejudices they had about those infected with AIDS/HIV. The magnitude of the sacrifices Ryan appears to hav e made in the name of AIDS education could indicate his dedication to reaching out to the children that he can change, as mentioned above. Ryan gave up anonymity, the ab ility to do things that normal teens do because his face was known across the country (1 992). In addition, he would never
109 have an intimate sexual relationship. The text sug gests the biggest and most painful loss to Ryan was that of not being perceived as normal. Not only did he have AIDS, but he mingled with famous people, which created further f eelings of jealousy and animosity from others. Ryan could not even have a dog. It a ppears that one day a police officer ran over RyanÂ’s puppy, and the man did not stop (White, 1992). The dog later died, a further indication that people did not want Ryan to have th e things that normal teens had. Another sacrifice that Ryan made was leaving the t own of Kokomo and relocating to Cicero, Indiana. By the time the move came abou t, he had endured name calling, vandalism of his home and locker at school, and jok es about AIDS. His family had been tormented. This relocation, however, was not a sig n of defeat, but rather that Ryan could not do any more to educate the people from his home town. They were not willing to be saved, and while he tried his best, in the end he c ut his losses and moved to a town where people were in awe of the sacrifices he made in the name of AIDS education. But, by detailing how he moved from Kokomo, Ryan is again s capegoating the people from the town and also restating his role as the savior, who could only save those willing to listen to his wisdom. In RyanÂ’s narrative, he and his family have been b oth scapegoated and mortified. Others found reasons why Ryan was infected as a way to differentiate themselves from him so that they could feel safe. The same ideals were applied to RyanÂ’s mom so that other parents could find reasons why their children would not be infected with AIDS/HIV. But by depicting them in such a way, Rya n also scapegoated those in his town who kept him out of school, by showing their i rrational fear of him and his
110 condition. But it was Ryan who truly mortified him self in his attempts to teach others about people with AIDS. JaniceÂ’s anger: Â“What made me think that the terminally ill possess a greater understanding of life? Why did I think they were magically transformed int o martyrs, saints? I hardly feel like a martyr or a saint. I feel more like a sacri ficial lamb desperately trying to avoid the knife that will slit my throatÂ” Burns, 1995, p. 31 JaniceÂ’s narrative about scapegoating, both interna l and external, is not as hopefully as RyanÂ’s story. Her quote shows that sh e found nothing redeeming or worthy in the process of dying. Rather, she has found her self fighting for a reason to live. JaniceÂ’s story is about sacrificing herself and her life to share her story with others. This portion of the analysis will look first at who is s capegoated, followed by her own mortification and feelings of responsibility about her infection with HIV. Janice writes about other people and their issues with AIDS/HIV. Sometimes her writings about others are favorable, and at other t imes it is clear that she has some issues with others who have AIDS/HIV. She is also upset b y those who are negative, but seem not to care about protecting themselves from HIV. F or example, she recounts the story of a friend of hers, a nurse, who refused to go to a bachelorette party for fear one of the strippers would infect her with HIV. Th is anecdote shows her disdain for this type of ignorance, and therefore she is scapegoatin g the uninformed for not knowing better. Janice clearly pointed out that her friend was a nurse, and this creates the impression that people at the time were irrational about how HIV was spread and who carried it. It was not as though this woman wanted to have sex with a stripper, rather she
111 feared it would some how Â“jumpÂ” on to her Â“as a bee jumps from flower to flowerÂ” (Burns, 1995, p. 42). The people who thought this are being portrayed as ignorant and irrational. JaniceÂ’s anecdote about her friendÂ’s i gnorance allows for Janice to create a scapegoat of those who believe that becoming infect ed with HIV only happens to certain types of people. An interesting aspect of JaniceÂ’s writing is the p ortrayal of other women infected with AIDS/HIV. In the previous chapter about guilt an anecdote about a crack addicted woman was provided. This was the woman who found h erself to be HIV negative, despite her many unprotected sexual acts, her reuse of needles, and her multiple encounters with STDÂ’s. By using these descriptive terms, Janice does not allow for this woman to be defined as a human being, but rather as a Â‘crack headÂ’ with a collection of sexually transmitted ailments and addictions. Jani ce scapegoats those women who engage in high risk behaviors and yet still remain HIV negative. These women are polluted, but Rueckert (1963) states that one can b e a scapegoat either because they are innocent or because they are polluted. In this cas e, they are innocent from HIV infection, but are morally polluted because of their behaviors It is a reminder that AIDS is not fair, and that good people do not deserve to get it while others that society deem less good do. Janice also discusses the women in a support group that she attended. One was infected because her husband had a gay affair, anot her by a needle stick while working as a nurse, and the other infected by unknown means. What is telling here is not who made up the group, but what Janice has to say about them Â“So, there I was in a group specifically for non-drug abusing, HIV positive wom en, but feeling more isolated than before. I felt pierced and stung by their anger ag ainst men, against institutions, against
112 God, against randomness, against reality. Anger is too time-consuming, and I do not have the time to wasteÂ” (Burns, 1995, p. 70). Ja nice scapegoats these women by commenting on her own feelings about their reaction s, thereby making their reactions seem inappropriate for the circumstances. Perhaps though what Janice truly has issue with is that she too feels this way, but cannot fin d the venue to express her feelings openly and honestly. By telling these womenÂ’s stor ies and then including her own commentary about them, she can find a way to expres s certain feelings through them and not be condemned for blaming her husband for infect ing her. Her statement that their anger is a waste is to deny the experiences that th ese women have had. Their reactions to their infection are to be expected, but JaniceÂ’s re action to their feelings is not. Her scapegoating in this situation is an indication of her own feelings about her condition, and the issues she has with her husband and his infecti on. These women serve as a way for her to externalize these feelings. Perhaps the most interesting scapegoat of all is B ill, JaniceÂ’s husband who allegedly infected her with AIDS/HIV. Throughout h er narrative, Janice tries to create a persona of Bill not as the outlet for her situation and her feelings about it, but like the Â“elephant in the room.Â” Not addressing this does n ot make it any less of an issue. There are a few places where she does admit to being angr y and even allows her anger to show. Â“At first I wanted you to apologize, to take the bl ame upon yourself, beg me for forgiveness. It took me a long time to acknowledge that apologies can only be given for deliberate actions. You never meant to hurt meÂ” (B urns, 1995, p. 185). But, as this quote shows, her anger is always depicted as brief and sh ort lived. This inner conflict may indicate more anger than she is willing or comforta ble to admit. The more she discusses
113 her battle with certain opportunistic infections, t he more Bill may be seen as the cause, and therefore, one scapegoat for JaniceÂ’s condition This is because as the narrative is written, BillÂ’s brief sexual relationship with a ma n is insinuated as being responsible for both becoming infected. The more she describes Bil lÂ’s positive attributes, the more it appears that she is trying to convince herself that he is amazing. But in the end, according to her narrative, BillÂ’s relationship wit h another man is revealed as the reason for their illness. Â“Bill and Henry look at each ot her, knowing I am the first person in the history of this disease to be cured! The rest of t he fantasy is predictable: Bill will also be cured, and we will go on to have child after child conceived on the stone floor of our dream country houseÂ” (Burns, p. 41, 1995). When on e reads something like this, such a call for a normal, healthy life, how can one not bl ame Bill for ending this for Janice? In RueckertÂ’s terms, he is the polluted who is willing to pay for his pollution of others (1963). Bill accepts the mortification of himself. This reluctance to blame Bill is also an example o f one way that Janice mortifies herself. By refusing to do the easy thing and pain t her husband as evil throughout her text, Janice denies herself the right to be angry a nd to verbalize that anger in a way that is appropriate, even healthy. While the quote above s hows that there were times when she did entertain ideas of blame and anger, she quickly suppressed them, thereby perhaps expressing her own inner strength and her love for Bill. The fact that she did not leave him also suggests that Janice was willing to endure not only her own physical demise, but that of her partner. This is an indication of the symbolic slaying of what remains of her life for she knew that at the very least, she would have to take care of both of them.
114 Like Ryan White, Janice allows for an education ab out the disease as she suffers from it. But Janice was not stigmatized in the sam e manner as Ryan, therefore her sacrifice was not as great in some ways. Neverthel ess, Janice is willing to allow others to learn about AIDS from her experience. So, when in the quote at the beginning of this section, she does not feel like a martyr, but rathe r the sacrificial lamb, she is actually both. For the sake of education, she does become a martyr, but she will be sacrificed in the end. While some may argue that she does this f or sympathy, this conclusion is not supported by the text. Rather, it seems that Janic e is willing to tell all in order to prevent others from becoming infected and from dying young And yet, despite all her pain and suffering, she states that she would be willing to marry Bill all over again even knowing what she does (Burns, 1995). JaniceÂ’s mortification is both a slaying of her ch aracter and of her body. While her own sexual past is never explored, Janice clear ly wonders if she had dated Bill when first propositioned, he would never have experiment ed with another man sexually. So, she internalizes this blame, and it is though she i s symbolically whipping herself with her ailments. The language used in this narrative sugg ests Janice may feel that she deserved AIDS on some level for not being there for Bill at his most confusing time. Janice even speculates that perhaps she is a Â“fag hagÂ” and that she lured him from his true nature of desiring men to wanting her (Burns, 1995). Janice states that she was afraid of big strong men after an incident at a picnic, but never really develops the incident. After that incident, she was always attracted to men who were sensitive and non-threatening. This questioning of her character and of her appeal is w hat Foss, Foss and Trapp have called a slaying of aspects of the self (2002). This depict ion of her is not flattering, rather it is
115 Janice degrading herself and rationalizing why she saw something in Bill that others did not. It is as though she is punishing herself for not finding more traditional masculine traits attractive. Once Janice has set up her own character mortifica tion, she then moves on to the symbolic slaying of her body. The interesting poin t is that this slaying does not start with AIDS, but rather with childhood asthma. Perhaps sh e feels that because she was ill as a child, she was predestined to be ill as an adult. Â“I always felt guilty for being sick, felt that somehow I was indulging in an unaccepted weakn ess, felt that I should be able to tough out anything my body gave to meÂ” (Burns, 1995 p. 106). This quote shows that Janice felt that she was of weak character and this weakness lead to her physical ailments. This ties in with her belief that as a Â“fag hag,Â” s he lured Bill to her, and is now suffering the physical ramifications of not wanting a more tr aditional male partner. Perhaps writing this book is an attempt to redefine her wea kness as a strength. Nowhere in her narrative does Janice ask for pity or sympathy. Sh e recalls the facts of her life clearly and directly, with little emotion. It would be hard fo r anyone to label Janice as weak. Her book is a testament to her constant struggle and he r strength to carry on. The only weakness found in this narrative is that of the fle sh, both sexually and medically (Burns, 1995). Yet, Janice continues to find reasons why she is n ot strong, why her experience is not as bad as other experiences with AIDS. One eve ning she and Bill went to see a play entitled Â“AIDS AliveÂ”. The gay men in the audience sat near the stage, whereas the rest of the audience sat in the dark around the edges of the theater.
116 I felt left out that night. I felt that I couldnÂ’t possibly suffer from AIDS as much as the men on stage; after all, I didnÂ’t have the a dded burden of being gay in a straight world. Now I realize that my thinking was wrong, that suffering is suffering. The hierarchy of AIDS suffering must be abolished; there are not two groups of those with AIDS: Those who deserve their disease and those who do not. There is really only one group. (Burns, 1995 p. 55) This quote shows that even Janice feels that there are different levels of suffering. Like Ryan, she avoids scapegoating homosexuals, but her reasons for this are because she does not want people with AIDS to be divided into distin ct groups. Although she states that there are no levels of suffering, the fact that she recounts this incident is an indication of her isolation, her unique role as an HIV infected w oman with a Â“maleÂ” disease. Her physical ailments are a sacrifice since she was one of the early women infected, and therefore, a guinea pig of sorts. While it is true that no one deserves AIDS, one could argue that by giving up her ability to have childre n, Janice has suffered more than others. But again, Janice may be sacrificing herself to sho w that AIDS hurts everyone infected, and that her story while unique in some ways, is ty pical of people with AIDS. Bobbitt (2004) offers that perhaps the best exampl e of mortification is being a victim of suffering. Janice has indeed suffered. Not only has her body failed her, but when Bill died, she lost the love of her life. Jan ice details her life with AIDS in graphic, unsettling ways. Â“AIDS has uncovered my terror, my greatest fears. I am a musical person, a person often called a good listener. I d epend so much on sound that I could never imagine living without it. Becoming deaf was incomprehensible to me. What happens to me now if my CMV leaves me blind? I thi nk I will kill myself if this scenario
117 plays outÂ” (Burns, 1995, p. 146). The medication t hat Janice needed to fight certain infections has left her mostly deaf, and now anothe r opportunistic infection threatens her vision. Can one imagine losing both senses so quic kly? And yet, Janice details her most intimate fears as though she is using her own situa tion to persuade others to use protection and not become infected. But her physical ailments pale in comparison to he r loss of Bill. Â“He is dying; God, heÂ’s dying!Â” I sobbed. I donÂ’t know if you heard me, but I think you did because at that moment you had your f irst death convulsion. You seized and gasped for breath, your eyes unseeing pi npoints of morphineÂ….But although your time had started, it was far from ove r as you had a seizure every hour for about twenty minutesÂ….I never knew dying w ould be so hard, but it was. (Burns, 1995, p. 232) These words would haunt Janice every day until she to died. Writing them down has made them real and permanent for her. Despite the anger she might have had for Bill, despite her own attraction to smaller, more sensiti ve men, and despite her seeing herself as weak because she was ill, the greatest sacrifice Janice has made is talking about BillÂ’s death and the pain that it caused her. The lonelin ess that remains is compounded by her own knowledge of what is awaiting her. Not only ha s Janice lost her husband, but she is in the process of losing her own life. Yet, she fo und the strength to provide a voice, to share her pain with others, and therefore, to make the greatest sacrifice of all: her and BillÂ’s lives for others. Sadly, Janice still appea rs to not feel worthy or strong. After BillÂ’s death, she feels even more incomplete and al one.
118 The need for identification is clear in this narra tive. In order to become educated, one needs to scapegoat those that Janice wants and mortify her by accepting her narrative as evidence of her self-sacrifice. The sacrifice s he has made is an attempt to save lives. If these attempts at establishing common ground are rejected, then her message will be disregarded. Janice needs to be defined as a sacri ficial lamb, one which can scapegoat others, not to be superior or better, but rather to highlight what not to do so that others do not become infected. While Janice did not give up her life in the same manner as Ryan, she did open her body as a template of AIDS educati on. Janice symbolically slays herself and others in her text in the hope of saving lives and preventing new HIV infections. Pedro and Judd: Giving and taking. Â“No one should or has to be where I amÂ…Â” Winick, 2000, p. 57 This narrative is a bit different from the first t wo in that the author is not the one dealing with AIDS/HIV, but rather the one experienc ing it second hand as he tells the story of Pedro, the one who is infected with HIV. Therefore, there are two protagonists who go through purification in terms of both victim age and mortification, despite only one being HIV positive. The section that follows w ill first look at the scapegoating that occurs in the text, and will then be followed by th e mortification of both protagonists. In a comic book format, there is a section where J udd explains where his own ideas came from about AIDS/HIV: the media. The im ages used in this section show the stereotyped ideal of the AIDS/HIV patient. Â“Most o f the news stories would feature shots of end-stage AIDS patients with purple blotch es all of their bodies, looking like they had just stepped out of Auschwitz Â” (Winick, 2000, p. 25, original emphasis). This
119 is where most people who do not know much about AID S learn about the disease. Judd is expressing his anger and displeasure at this ste reotyped view. After meeting and getting to know Pedro, Judd knows that this is not the case with every patient, but the media at the time did not offer other possibilities He scapegoats the media with his implication that true representations of those with AIDS/HIV are not found in popular media. Judd further suggests that this media generated ima ge was the reason why he was, despite his self-proclaimed liberal open-mindednes s, afraid of living with someone with AIDS/HIV. This implies that perhaps the reason why people have a negative image of those with the ailment and often blame them for the ir disease is because the media shows only the worst-case scenario. Therefore, the media not only reinforced the stereotypes of those with AIDS/HIV but may have created them as we ll. Furthermore, Judd stated that because there was so much mass mediated information about AIDS/HIV during the 1990Â’s, he felt that he was educated on the matter, when in fact he only had a small piece of the bigger AIDS/HIV puzzle. Pedro was also given misinformation at a time in hi s life when teaching him about safe sex and AIDS/HIV might have made a difference. When Pedro was in the seventh grade, a doctor in a three-piece suit came to talk to his class about a new medical issue called AIDS. Â“In a serious tone, he told them abou t AIDS and those people who contracted it. Deviants, drug addicts, prostitutes Â—Â“ Those people get AIDSÂ”. He never directed the lecture toward the children in the cla ss, just to older outsidersÂ” (Winick, 2000, p. 45). Had Pedro known that the term devian t was a euphemism for gay man, he might have learned something that would have saved his life. Instead AIDS was
120 presented as something that happened to other peopl e, not children or the adults these children knew. The way the medical establishment c hoose to handle this information was to say only the basics, while not really saying any thing at all. Perhaps the information was provided only to reduce panic, but this man and what he represented at the time, the blame of the Â“othersÂ” who were deemed unworthy, is being scapegoated as one of the reasons Pedro might have found himself ill-prepared for being young and gay in the 1980Â’s. In addition, he represents all that was wr ong with the early dissemination of information about AIDS. It was never a disease of deviants, drug users or prostitutes, but perhaps a re-framing by the Reagan administration s o that the ailment could be ignored by mainstream America (Alcamo, 2003). PedroÂ’s mother is being scapegoated as well. Much like Ryan White talking about the people of Kokomo, Indiana, this is a reci procal scapegoating. Although PedroÂ’s mother died of cancer, the implication in t he narrative is that Pedro looked to fill that void in his life, and did so in the arms of ot her men. Â“Academics wasnÂ’t the only answer to PedroÂ’s loneliness, his grief. He was se xually active at 13. Looking for the love he missed so muchÂ” (Winick, 2000, p. 43). Thi s quote implies that had PedroÂ’s mother lived, he would never have needed to fill th e emptiness in his life. The irony was that it was his motherÂ’s memory that pushed him to excel in everything he did in his life, and evidently this carried over into his personal r elationships. The other issue is that had PedroÂ’s mother lived, she may have educated him abo ut protection. His father knew he was gay, but for whatever reason did not tell him a bout being safe. Perhaps as a straight man, PedroÂ’s dad did not know about the dangers. H owever, this avenue of blame was
121 never pursued. Instead, the text links PedroÂ’s sea rch for attention and love directly back to the loss of his mother (Winick, 2000). The men who had sex with Pedro when he was a young man are also scapegoated. Â“When Pedro was a teen, a boy really, he was taken advantage of by older menÂ…he was young, lonely, confused, and needing loveÂ” (Winick, 2000, p. 101). This quote seems to refer back to PedroÂ’s filling the void left by his motherÂ’s death; but in addition to that, the older men who used Pedro are highlighted. This imp lies that Pedro did not know any better when he was young, and perhaps not to blame because from JuddÂ’s perspective Pedro was taken advantage of sexually. The inferen ce is that the older men knew what they were doing, but Pedro did not. Therefore, the sins of not using protection and having sex with men can be placed on the shoulders of those who took advantage of Pedro, as they should have known the risks involved Note that the age of these men was clearly highlighted: they were older. This sugges ts that they knew, but did not share with Pedro, the risks involved with such casual rel ationships. Pedro is also depicted as looking for love, but clearly these men are depicte d as looking out for their own sexual gratification. They are implicated as selfish pedo philes that used, abused, and infected young, innocent Pedro. Men such as these who prey upon sexually confused young men are the villains of this story, and of PedroÂ’s life It is because of them that he ultimately dies. Judd uses himself to represent those who were ignor ant about AIDS. It might be argued that Judd should be scapegoated for his ster eotypes and attitudes about those who have HIV, but revealing his lack of education is on e way in which Judd mortifies himself. He repeatedly claims that he is open minded and lib eral, but then realizes that he holds
122 the same ideas and stereotypes about those with HIV as do many others. By admitting that he has biases, he is slaying his character, be cause in fact he is not as open minded and forthcoming as he purported to be. Â“Of course IÂ’d be fine. IÂ’m liberal boy and had decided I was okay with this. Problem? Not me! I am okay with thisÂ….well, no I wasnÂ’tÂ” (Winick, 2000, p. 30). By admitting to his own fears, Judd is showing it is one thing to believe that you are a certain way, and an other to prove it when put in a certain situation. JuddÂ’s disclosure shows him to be human but at the same time, when offered the chance to be on the Real World with someone wit h HIV, he did not back down. Instead he embraced the opportunity to learn. It is ironic that JuddÂ’s choice to do the TV show c hanged his life, but not in a way he intended. Judd hoped the publicity would help h is career goals as a cartoonist, but he never could have envisioned that he would change hi s entire focus and become an AIDS educator. This is the ultimate gift that he gave P edro, because he dropped his own desires, his own future, to carry on the legacy of his friend. So, Judd carried on PedroÂ’s legacy of education when Pedro became too ill to co ntinue. Â“Without catching a breath, I was out lecturing the next week. Another after tha t, and another after that. It was the only thing I could think of to doÂ” (Winick, 2000, p 162). Judd is talking about how after Pedro died, he threw himself into AIDS education as a way to honor his friend. But Judd did this for himself as well. By giving up his own dream, he actually combined both his artistic talents and his gift of being able to talk to people about Pedro and their friendship. He did not have a chance to mourn Pedro, rather Jud d had to save lives, and in the process, much like Ryan White, gave up any chance o f normalcy.
123 Although Pedro dedicated his own life to AIDS educa tion, the time this dedication took was something Pedro sacrificed. In stead of being with his family and taking care of his health, Pedro was educating anyo ne who would listen about AIDS/HIV. Much like Judd and Ryan White, he gave u p anonymity to save the lives of others. PedroÂ’s first taste of mortification came when he disclosed his status in a presentation to twenty-five of his fellow high scho ol classmates. His teacher was so moved that she asked if he would be willing to talk to the entire school. Â“Consider what Pedro was doing. He was 18 years old. You get up in front of a thousand peopleÂ—your classmates, your friends, basically the people who make up your entire existence and announceÂ…I am HIV positiveÂ” (Winick, 2000, p. 54). For most people, giving a speech would be enough of a sacrifice, but imagine telling fellow students that you are infected with HIV! Pedro always felt he had a calling to sa ve people, ever since he was a little boy in Cuba, and this was his way of fulfilling tha t prophesy. What was most moving about this particular presentation was that it went beyond telling people the basics and showing them that people they knew could be infecte d. Pedro used his life, his status, and his experience to persuade the audience to be c areful, but more than that to realize that people with HIV were no different than they we re. Also, Pedro sacrificed his career goals. Once he f ound out he was positive, he decided not to pursue his dream of becoming a physi cian, despite the grades and background that would have allowed him attendance t o the best colleges and universities. Â“Then he made a decision. His life would become th is fight. It would be his full-time vocation to educate young people about AIDS and HIV Â” (Winick, 2000, p. 57). But for Pedro this was not enough. He could have traveled around the world and not reached
124 those who needed this information. So, he decided to further mortify himself by exposing himself through mass media on the Real Wor ld. While this had its rewards in that PedroÂ’s message could reach many more people, it also meant that the world was going to see Pedro if and when he became ill. Ther efore, if his message was that people with AIDS/HIV were just like everyone else, he was going to have to make sure that he did not get sick, which is something that no one co uld predict. While filming the show, Pedro fell in love. Of cou rse being on a reality show, this was public knowledge. Therefore, Pedro had no privacy as he explored his new relationship. Eventually, he would give up trying and decided to marry his partner on the show in order to prove a point. But again, this wa s a self sacrifice that Pedro had to make in order to have access to a mass audience for AIDS education. It was not as though he used the show for his lectures, but rather used his life on the show to prove to others that he was normal. But, of course he was different, he was dying and had to hide this fact from the cameras. By being on the show, Pedro may have saved lives, but in the process, he gave up any possibility of having one of his own A few hours after he died, the news was already reporting that Pedro had lost his life to AIDS. Even in death, Pedro could not have peace, but his message about those with AI DS/HIV did reach many, many people. Pedro and JuddÂ’s story, since they both are AIDS ed ucators, scapegoated the media, the ignorant, and those who would take advan tage of young men. But they do not blame people for becoming infected nor did they pre sent that image of AIDS in this narrative. Both men gave up the futures they saw f or themselves in order to save the lives of others through education. While there ar e certainly benefits to this knowledge,
125 Pedro most likely would have preferred to have live d the life he envisioned for himself instead of fighting his battle with AIDS. In the e nd, his sacrifice and that of his best friend, Judd, most likely touched more lives than t hey will ever know. Bob and Roger: Down with the medical establishmentÂ“What have I done? Maybe it was too much too soon for RogerÂ” Owen, 1997. p. 76 Although RogerÂ’s story, through BobÂ’s accounts, is different in that he is allegedly cured of AIDS, scapegoating and mortifica tion are still present in this need for redemption. Instead of blaming people as the past narratives have, Bob uses Roger and then himself to represent all that is wrong in the definition of what constitutes AIDS in terms of a medical definition. In the section that follows, I will show how Bob scapegoats and mortifies Roger while simultaneously scapegoating himself. Early in the text, It is made clear that Roger beca me addicted to drugs while in Vietnam. There was nothing to indicate he had the preexisting potential to become an addict, therefore the experiences he had in the war led him to use drugs as a coping strategy. Â“A lot of good men couldnÂ’t handle the s tress and went to pieces in Vietnam. Roger was one of themÂ….The constant pressure got to him and he turned to drugs. A lot of doctors, nurses, medics and G.I.Â’s did tooÂ” (Owe n, p. 2, 1997). This statement seeks to clear him of responsibility for contracting AIDS/HI V. It was through the drug use that he became infected, but by shifting the blame to his e xperiences in the war, the American Government then becomes the scapegoat for RogerÂ’s r esulting infection. Ironically, major American medical establishments will also bea r the burden of RogerÂ’s and otherÂ’s ailments.
126 After much research, Dr. Bob, much like Judd in the previous section, also scapegoats the media for its presentation of incorr ect information about AIDS. However, the media that Bob sullies is that of prestigious m edical institutions. Â“But the AMA (American Medical Association) and the CDC (Center for Disease Control and Prevention) are pouring out news releases for the m edia. Radio. TV. NewspapersÂ…magazines. They keep feeing the world s tatisticsÂ—40,000 victims today, 50% of them dead. Inciting the people to panicÂ” (O wen, 1997, p. 53). Bob argues that AIDS is not what has been defined by these medical organizations, and therefore scapegoats them for creating information geared tow ard scaring the public into believing that there is a deadly virus randomly killing peopl e. The quote shows his early disdain for such information. Bob appears to believe that people will be misinformed because AIDS is a billion dollar industry (Owen, 1997). This responsibility for misinformation progresses from media released from medical institutions to certain medical doctors rep resenting these institutions. Bob recounts an incident where he and two other colleag ues were discussing a book written by a husband and wife, who the doctors felt did not have medical credibility and needed to be Â“locked upÂ” (Owen, 1997, p. 101). These Â“fel onsÂ” were reporting that Americans needed to eat more fruit and less protein (Owen, 19 97). These two colleagues were ridiculing holistic approaches to medicine, which B ob was just beginning to explore at the time this conversation occurred. Because Bob w as desperately trying to save RogerÂ’s life, including feeding him fruit if that would wor k; these two doctors came to represent traditional medicine, and as such, are scapegoated for their close-minded approach to
127 potentially healing remedies. They are being used to represent all that is wrong with those who practice traditional medicine. Bob continues to scapegoat traditional medicine by questioning the prescription of certain drugs for certain ailments. Â“These convent ional remedies, being suppressive in nature and having undesirable side effects, interfe re with the normal bodily processes, and actually inhibit restorative and healing effort s of the body. Eventually they cause more damage than goodÂ” (Owen, 1997, p. 160). Bob h as come to believe that prescription drugs may be bad for people, but there are two scapegoats created in this realization. The first would be the drug companies who create and produce drugs that Bob has come to believe do more damage than good. The other would be physicians who continue to prescribe this medication because the p harmaceutical industry informed them it would help their patients. The key here is that these doctors do not question what is in their patientsÂ’ best interests, but instead do what is easiest for themselves. This scapegoat is recognized when looked at in terms of what Bob i s trying to do for Roger and what the medical establishment has not done for other ill pe ople. Thus, Bob has successfully, by comparison, made a martyr out of himself and a scap egoat of doctors who do not do enough for their patients. Early in the AIDS epidemic, the four main groups i mpacted with AIDS/HIV were labeled the 4-H club: Homosexuals, Hemophiliacs, H eroin users, and Haitians (Garrett, 1994). One will note that the only group of people from a certain culture blamed for the spread of this disease were Haitians. It was belie ved that gay men would travel to Haiti looking for cheap sex and that the Haitians might h ave initially given the virus to gay men who, in turn, brought it back to the United Sta tes. Then, the Haitian men would go
128 back and have sex with their wives, spreading it to them as well (Garrett, 1994). Thus, Haitians were also scapegoated not only as a group infected with the virus, but also one responsible for bringing it to the United States. Dr. Bob redefines this entire perception by reframing this version of AIDS history. Dr. Bob concluded that the cause of AIDS in Haiti was actually the injections given by the medical establishment in the form of c hildhood vaccinations against such diseases as mumps and measles. This redefinition o f the cause of HaitiÂ’s epidemic is a re-scapegoating of the establishment that ultimatel y labeled them as one of the main groups for carrying HIV. Â“To combat HaitiÂ’s diseas e problemsÂ….most if not all Haitians are regularly and routinely treated with immune-suppressing drug s in the form of vaccinations. HaitiÂ’s problem was drug abuse It mattered not a whit that the drug use was legal. The end result was exactly the sameÂ” (O wen, 1997, p. 140). Therefore, Haitians were not responsible for the disease that was killing many of their own people, but the vaccinations provided to them by the United States government had broken down the immune system and allowed these opportunistic i nfections to take hold. This discovery scapegoats the drug manufacturers and, in essence, holds them responsible for the entire AIDS epidemic and the resulting deaths. This is a large leap taken by Dr. Bob, but he need ed to highlight the damage he feels other physicians and the pharmaceutical indus try have done to their patients. This new-found way of thinking becomes incorporated into his own way of practicing medicine. He even stops prescribing medications to his patients for fear that he is causing more harm than good. Â“I had begun trying t o treat my patients differently, prescribing fewer drugs, giving fewer shots, and ex plaining why I was doing what I was
129 doing. Surprisingly, some patients reacted negativ elyÂ” (Owen, p. 130, 1997). The last sentence in the quote implies that some patients ar e afraid, and therefore, unwilling to change. By portraying certain patients this way, B ob is finding fault with those who do not care enough to look for better alternatives to their medical conditions. He indicates that to treat these patients as they had in the pas t would be akin to murder, and thus, he refuses to treat them at all. The physicians who w ould treat them are being blamed as well, again in comparison to Dr. Bob, who is willin g to risk his lucrative medical practice for the benefit of others. By mentioning these typ es of patients and these types of doctors, Bob has created a scapegoat for why he bel ieves that traditional medicine continues to be practiced in this country, and he b elieves it is because no one wants to take the risks needed to challenge the system. Further, Bob does this with Roger and his poor eati ng habits. He is not advocating that one blame Roger for his current med ical condition, not in the traditional sense of blame. Bob uses Roger as an example to sc apegoat all the unhealthy things that people do to their bodies. For example, Dr. Bob te lls Roger that he must cut both caffeine and salt out of his diet because Bob feels that substances such as these will ultimately lead to the breakdown of the body (Owen, 1997). This is a rhetorical move that faults RogerÂ’s unhealthy lifestyle choices and sends a message to the audience about their own unhealthy habits. Therefore, Roger can s erve as the vessel of blame for certain unhealthy practices. Of course, by allowing himsel f to represent the unhealthy ills of others, Roger mortifies himself. In addition, all the sacrifices Bob is making professionally also mortify him.
130 For Roger, allowing himself to be a medical guinea pig so that others may learn from his suffering is clearly a sign of mortificati on. His guilt about having AIDS is evident, as seen in the last chapter, and yet he ex poses himself and his medical experiences so that his pain and misfortune do not have to be endured by others. In addition, at the end of the narrative, he explains that he has relocated to Africa. His complete recovery from AIDS has forced him to have to leave the country because the medical establishment was hunting him down (Owen, 1 997). This is again an indication of how he was willing to give up his entire life fo r medical research and saving lives. Although this narrative is really RogerÂ’s story, Dr BobÂ’s mortification is more evident since these are his own words. As mentione d above, Bob mortifies himself by at first presenting himself as a representative of the medical establishment. In this sense, he allows himself to be scapegoated for his past ways of seeing patients and diseases. At the same time this slaying of his previous uninformed s elf is his own mortification. Bob is willing to admit to going along with the status quo and by doing so allows others to find him misinformed and selfish. And, like the aforeme ntioned authors, the act of writing this book is a further act of mortification since B ob has sacrificed his medical practice, anonymity, and family to the scrutiny and condemnat ion of others. One example of how he risked his medical practice w as shown above, as Bob refused to treat patients with traditional medicine which he believed would do more harm than good. The argument was made that in this situ ation the pharmaceutical companies and certain medical doctors were being scapegoated by not caring more about their patients. However, BobÂ’s more patient-centered foc us shows the risk that he was taking when he decided not to just prescribe pills because it was easy for him to do so, but rather
131 he wanted to actually heal the patient. Bob also r isked losing his practice when he blatantly refused to treat patients as he had in th e past. BobÂ’s actions indicate his willingness to take a stand against traditional med icine. Thus, BobÂ’s choice to see medicine differently, and subsequently put that vis ion into practice are examples of his mortification as he slays the traditional physicia n in himself and allows a more open and progressive doctor to be born. BobÂ’s change in views extend beyond his patients to include his family. It was indicated above that Bob felt HaitiÂ’s issue with AI DS came from the vaccinations they received. Of course, the scapegoating was clear in this situation, but Bob took it one step further and applied it to his family. He refused t o have his son vaccinated for school, which at the time was not only a stand against the medical establishment, but also the law (Owen, 1997). Bob found a way around the law, and his son did not have to receive the childhood vaccinations required by schools. Howeve r, this stand against inoculations may have showed how he was willing to risk the heal th of his own family for what he now believed. There will be some who will choose t o use this scenario to condemn Bob and claim that he is a bad father and a incompetent physician. And in doing so, such an act would allow for an out against believing what B ob was trying to share. Bob was willing to take the chance some might turn against him after this anecdote. However, he felt strongly about what he was doing, and was will ing to take that risk. This is how he mortified himself in this situation, by knowing tha t some would vilify him for this act, and using the story in his book anyway. RogerÂ’s recovery from AIDS is allegedly unprecedent ed. One would think that this narrative would have been a major news story. Although the text never suggests that
132 Roger had anything other than AIDS, there appears t o be no other sources to either refute or validate this claim. In order to address this v ery issue, Bob discusses the fact that many who have broken away from traditional medicine have been scapegoated as heretics, hence the reason why this story has not b ecome mainstream news. Apparently it was dismissed because of the preconceived idea that anyone who practices holistic medicine is not credible. Â“The AMA is cracking dow n on any operation that even looks like itÂ’s using an alternative approach. They are closing down clinics and private operations all over the countryÂ…these people are sc aredÂ” (Owen, 1997, p. 198). But Bob feels that he needs to share this information with others. In the process of scapegoating the American Medical Association for being small-mi nded, petty and akin to murderers, Bob paints himself as a martyr. Unlike Ryan, Pedro and in some ways Janice, his goal here is not to educate about AIDS per se, but rathe r to educate about the realities of the medical establishment and the harm they are doing. In contrast, these few doctors and clinics are willing to sacrifice everything for the betterment of others. BobÂ’s altruism leads to his mortification. The same can be said a bout Roger and any other physician with similar ideas. On the other hand, anyone asso ciated with the medical establishment, is faulted for being wrong about medicine and how i tÂ’s practiced. Bob moved his family to Africa, with Roger, to escape this Â“small-minded ness.Â” The last person who mortifies himself in this text is Bob Owen, the author of the book. This is because some will question the valid ity of the narrative, and others will wonder if he made it up. His credibility as a writ er, researcher, and non-medical persona will come into question. By writing this book, he is representing the protagonists in the story and making a claim as to the validity for all the contained information. Thus, like
133 Dr. Bob, MD and Roger, he is willing to risk his ca reer because he feels the information provided in the narrative is more important than an y thing else. His mortification comes as the voice, the channel, for which this story can find an audience. Along these same lines, the publishing company also takes this risk and sacrifices future book sales and submissions by publishing a story that may cause th e medical establishment to attempt to stop publication of this and other such health-rela ted materials. In the end, any entity involved in the publication of something that not o nly goes against the status quo, but is controversial enough to draw attention to itself, i s taking a risk. This is true of Roger, both Bobs, the publishers and the readers who are w illing to take what is said here as truth and question traditional medicine. Chapter summary This chapter explored the concept of purification i n terms of both victimage, or scapegoating, and mortification. The very act of w riting these stories mortifies the author because to make public oneÂ’s life with an illness i s to be willing to receive criticism as well as praise. With a disease such as AIDS/HIV, t he risk is greater for negative feedback than with a disease like breast or colon c ancer. These narratives scapegoated the prejudiced and the ill-informed. This does not mean those who truly were lacking in information ab out AIDS/HIV but rather those who did know and choose to believe something contrary. The media were also victimized as some of the information provided was incorrect, lac king, or extreme in the portrayals of those with AIDS/HIV. The protagonists of the narratives were mortified. To say these people infected with AIDS/HIV did not suffer would be to diminish t heir experiences. Each person in the
134 narratives endure the physical and social implicati ons associated with having a disease that is often called a plague. The pain these indi viduals endured can never really be understood, but their sacrifice for others can be a ppreciated. While many may have had feelings of guilt about being ill, none of them int ernalized fault for being infected in the first place. This is important to note, because ot hers were looking to victimize them for being infected, and yet the protagonists and author s did not take on that label. Ryan White understood that he had done nothing to c ause his illness, but he did endure the fear of others and by writing and sharin g his pain, he attempted to change the definition of AIDS. This is RyanÂ’s own mortificati on, as he fits BurkeÂ’s (1970) third definition because he was too good for this world h ence his sacrifice is the most perfect. Janice was one of the first women to find herself i nfected, and while she does suffer both physically and emotionally, her anger appears direc ted toward those who refuse to see how deadly and devastating AIDS can be. Pedro and JuddÂ’s narratives both scapegoat the media and its representatives for not telling t he whole story about AIDS. At the same time, their ignorance and their willingness to shar e that ignorance, is a slaying of the self. Finally, Dr. Bob and Roger are trying to blame the medical establishment for their situations, but both took a risk in sharing their s tories as they were forced to leave the country for going against the status quo. This chapter focused on the purification of the AID S patient and the ways in which each one either used mortification or victima ge to do so. In the redemption drama, the first cycle is the feeling of being guilty or p olluted, as was seen in the previous chapter. This pollution must be cleansed, and the way to do that is through purification rituals, whereby either one externalizes or interna lizes that guilt. This step is vital in
135 order to reach the end result of this drama: Redem ption. Redemption cannot be obtained until the stain of guilt or pollution is removed. Bobbitt (2004) suggests that for many Burkean scholars, purification is the most importan t part of this drama, but as the next chapter will show, for these infected individuals, the redemption is the end point in multiple ways.
136 Chapter Five: The Redemption of Self and Others The preceding chapters have investigated the first two parts of BurkeÂ’s (1984) redemption drama. The third chapter addressed and defined the concept of guilt. The fourth explored the idea of purification and ways t o either victimize someone or mortify oneself. This leaves BurkeÂ’s last part of the dram a: redemption. While much has been said about both guilt and purification, significant ly less has been analyzed using the rhetorical strategy of redemption (Bobbitt, 2004). One reason for this may be that it is hard to attain, and very often once achieved redemp tion is fleeting and momentary. However, for this research, redemption may be the m ost important part of the overall drama. Some of these protagonists do not have the luxury of a continuous search for redemption; therefore, their rhetoric must attempt redemption on the first try. This chapter will delineate what redemption is and then how each of the four narratives attempt or achieve this end state. Burke (1961) stated that redemption could be conte xtualized as a move toward something or it could be a repayment of some kind. He also added that before one could understand what redemption is, a person must first fall; only when guilt is seen can one truly understand to obtain redemption. Since one f eels guilt because one cannot be perfect, this pursuit of perfection can also been s een as a way to achieve redemption. However, once obtained, redemption is fleeting, and therefore only temporary (Burke, 1961). Â“Is not the sufferer exerting almost superh uman efforts in the attempt to give his life a certain form, so shaping his relations to people in later years t hat that they will
137 conform perfectly to an emotional or psychological pattern already established in some earlier formative situation? What more thorough il lustrations could one want, of a drive to make oneÂ’s life Â“perfect,Â” despite the fact that such efforts at perfection might cause the unconscious striver great suffering?Â” (Burke, 1 966, p. 18). Brock (1999) extends the definition of redemption b y stating that redemption is never a permanent change, but rather a short-term f ix for a larger problem. Foss, Foss and Trapp (2002) state that it is a rebirth that sy mbolizes a time of rest or stasis. In addition, this can be Â“a change in the self, a chan ge of identity, a new perspective, or a feeling of moving toward a goalÂ” (2002, p. 211). R uckert (1963) expands on this definition by offering that this terminal point is more psychological than metaphysical. This means that the termination point or redemption is subjective in that what one sees as a good ending others may not see in the same way. For example, a person might find redemption in being punished for a crime, but other s may not find that punishment strong enough to release the person from guilt. Bobbitt ( 2004) observes that while much has been studied using BurkeÂ’s idea of purification, th e concept of transcendence, change, and movement toward a goal has been primarily ignor ed by scholars. Burke (1984) explains transcendence as the adoption of another point of view from which op posites cease to be. This is, at present, the nearest approach we can ma ke to the process by verbal means. One may Â“transcendentallyÂ” organize his int erpretation of human motives by the following broad emphases: a human act is do ne for God, for an ideal (humanity, culture, justice, truth), for a corporat e grouping (political or
138 otherwise), for himself, a new way of defining the individuals identity. (p. 3368). Rueckert (1963) offers that Burke has many concepts to explain what constitutes redemption including the upward way, the mystic way the search for the self, and the grammar of rebirth. These are archetypes which rep resent multiple ways to reach perfection or redemption. The upward way, the mystic way, the search for the self all follow the pollutionpurification-redemption archetype; and any work whi ch has this kind of a structure enables the author and/or the reader to g o on a purgative, albeit symbolic journey, for if he submits himself to the work, the progressive form of the work will, ideally, induce him in a similar kind of prog ression and his reading self will undergo the purgative journey the author has prepar ed for him. (Rueckert, 1963, p. 111) This quote is significant because it indicates tha t not only is the author going on a journey of redemption, but the rhetoric is the crea tion as well as the means of the journey. Thus, to summarize, redemption can be seen as a cha nge, change in identity, beliefs, ideals, or it can be seen as a moment of rest, or a search for the self, or a symbolic rebirth. Burke (1969) is interested in either the appeal to a real or an ideal audience and can include the self in either category. A man can be his own audience, insofar as he, even in his secret thoughts, cultivates a certain idea or image for the effect h e hopes they may have upon him; he is what Mead would call an Â“IÂ” addressing its Â“m eÂ”; and in this respect he is
139 being rhetorical quite as though he were using plea sant imagery to influence an outside audience rather than within. (p. 38) Thus, just as a rhetor can use tactics to persuade an audience to accept a certain claim or image, so too can that rhetor use the same means to persuade him/her to see the self differently. Chaim Perelman offers that an ideal audience is the same as a universal one, made up of all reasonable and competent people (1968). These are audience members the speaker or author envisions when they attempt to pe rsuade. This can also include the self. This creation of an ideal or universal audie nce serves two purposes: it allows the rhetor to choose and create the perfect argument, a nd it creates a rational audience when they do accept the message put forth by the rhetor (Perelman, 1968). The selection of examples where redemption is used as a rhetorical strategy is limited, and perhaps one of the few who truly follo ws through with the entire redemption drama is Bobbitt (2004) in his analysis of Martin L uther King, Jr.Â’s I Have a Dream Speech Bobbitt (2004) believes that KingÂ’s ideal end wo uld be a place where a national rebirth of the definition of race existed. It would be a Â“heaven on earthÂ” scenario where the dreams and promises of a better life were offer ed to those who did not have such opportunities before. Of course since King was a spiritual leader, it could be that his use of the term Â“heavenÂ” was also an indication of a sp iritual location as well as a political one. Bobbitt (2004) explains that since redemption can be defined as a move forward, the marches, the protests, and the speeches can be seen as a move in that direction by those engaged in the fight for civil rights. Since it was argued that Whites felt guilt because of the treatment of Blacks, they can find r edemption from this guilt by
140 participating in this forward movement. This could be a physical participation in the movement or it could be an emotional one, such as a redefinition of racial issues. KingÂ’s speech allowed for the redemption of both Blacks an d Whites to be possible (Bobbitt, 2004, p. 62). There are multiple descriptions and interpretations of how one reaches and defines redemption. The example used above about K ingÂ’s speech provides insight into how redemption can be created by both the speaker a nd the listener together. It is also for this reason that the idea of the self as audience i s included in this section. This research argues that the author/protagonist of each narrativ e finds redemption in multiple ways. One is that they find redemption in normal day-to-d ay living, things that healthy people deal with everyday. Another is through the love an d acceptance of friends and family. But, there is a critical role played by the reader of these narratives, because the authors can be redeemed if the ideal audience (reader) perc eives them in a certain way and, thus, accepts the rhetorical message found in each story. If by the end of the narrative, the idealized reader absolves the infected individual o f any guilt or wrong-doing, then that person has been redeemed through an ideal audience. The possibility of this redemption leads to the self as audience, as the author/protag onist can see him/herself as the audience sees that person. For example, perhaps Martin Luth er King, Jr. had an ideal audience in mind when he wrote his famed Â“DreamÂ” speech. That audience would be one who believed in the importance of civil rights and the need for unification and equality of all Americans. With this audience in mind, King could create arguments that would appeal to these types of people so that they would be more likely to step forward, either psychologically or physically. At the same time, t he rhetoric used would flatter and
141 validate such opinions, and the ideal audience woul d then see King as an ideal representative of the movement. The audienceÂ’s pos itive feedback would reconfirm King as the most worthy choice as leader, and in the end both King and the movement would be redeemed. Thus, the rhetor is calling for the a udience to redeem him/her based on the arguments used for that specific audience. There are various ways to define what redemption me ans, although the definitions may be subjective and abstract. This research will follow the vocabulary of Burke (1961) when he states that redemption is moving forward, a s if toward a goal and that it is marked by a fleeting period of rest or stasis. Thi s view is also coupled with the terms used by Foss, Foss and Trapp (2002) when they explo re changes in the self, identity, world views, and perspectives. Redemption then is a rhetorical destination that is attempted by each narrator/protagonist in the narra tives analyzed. It is found in differing degrees and attainment can be found in multiple mea nings. Redemption can be seen as enlightenment by education, validation from another person, or reaching a momentary act of perfection. It could also be a change in identi ty that leads to a new perspective. Since redemption is fleeting, there will be many moments of it in each narrative. However, there is a larger sense of redemption, and that is found in the relationship between the narrative, the protagonist, and his/her ideal audie nce. For the narratives, redemptive rhetoric is believing that someone with HIV or AIDS is not at fault for his or her medical condition.
142 RyanÂ’s end: Normality achieved. Â“I never really believed that Ryan would die of AID S. Our whole family thought that God would send us a miracle. I now believe He did send us a miracle in Ryan. Sometimes a miracle isnÂ’t life long; itÂ’s what a pe rson is able to do with lifeÂ” Jeanne White (RyanÂ’s mom), 1991, p. 286 The quote that begins RyanÂ’s section of this chapte r highlights the dedication and the sacrifices that Ryan made to both the issue of AIDS and to those with the ailment. Ryan did not set out to be a hero; rather he was si mply a young man who fought for the right to be treated like everyone who was healthy a nd HIV-free. Ryan wanted to be a normal teenager. His desire for redemption can be found in his positive attitude and spirituality, by those who loved him and treated hi m as Â“normalÂ”, and finally by the ideal audience agreeing that he was just another teen. Foss, Foss and Trapp (2002) explain that one can be redeemed through seeing life in unique ways. Ryan White most certainly found ma ny ways to view life as rewarding and fulfilling. One of these ways was through his use of humor and sarcasm. Ryan was never blatantly disrespectful, but the way he descr ibed things showed his ability to appreciate the irony in certain situations. We got phone calls and visits from healers as far a way as Tennessee and Florida. First, each one had to sit on our sofa for a couple of hours and tell us how holy he was, how many people he had already healed, and how heÂ’d gotten his call from Jesus. I wanted to ask how Jesus had gotten his ph one number, but I did not dare in front of Mom. (White, 1991, p. 85) This quote is not an indication of RyanÂ’s rejection of faith, but rather his ability to see that sometimes while some had good intentions and t hey just wanted to help him, some
143 where misguided in these attempts. However, it all ows one to see that Ryan could appreciate the humor in situations and that he did not take himself too seriously. RyanÂ’s maturity in dealing with life and its diffic ulties also allowed him moments of peace. He believed that one needed to see life as a blessing and not to take anything for granted (White, 1992). Â“I hate the idea of any thing that makes me seem sick forever. Maybe I have an incurable disease, but I donÂ’t have to be a permanent invalidÂ” (White, 1992, p. 21). Burke (1961) explained that one sign of redemption is a move forward, and so RyanÂ’s view of life as a gift can be seen as a m ove forward anytime his ailments attempted to keep him back. Instead of feeling def eated and giving up, Ryan took the next step, regardless of how difficult. This allow ed him to redefine the idea of what it meant to be ill. For some it would be the chance t o be taken care of or to give up, but for Ryan it was the opportunity to fight harder and fee l a sense of accomplishment, no matter how fleeting, when he overcame adversity. His rede mption was found not in getting better, but rather in not being perceived as one wh o is ill in the first place. Perhaps RyanÂ’s sense of humor and his outlook on li fe stem from his spirituality and his belief in God. Ryan could put his terminal illness into perspective because he felt that he was moving onto a better place when he died Â“I believe that when you die you go to a better place. And, I believe in God and ev erything, so I am not really afraid of dying. I am very religious. ItÂ’s just there when I need itÂ” (White, 1992, p. 192). RyanÂ’s faith is what Foss, Foss and Trapp explain as progr essing toward a goal (2002). He wants to go to Heaven, to a better place, and in order to do so he must live a good life and not dwell on issues. These issues also include those w ho would seek to keep him out of school or any other venue due to his HIV status. B y being a good person and a role
144 model for others to emulate, Ryan progressed toward the goal of perfection, of being the kind of person he wishes others would be to him. It is not only his religious beliefs and sense of h umor that offer him a chance at redemption, but also the fact that some people in h is life refused to treat him any differently. Throughout his narrative, Ryan consta ntly stresses his desire to be seen as being a normal young man, and when people in his li fe treated him in this way, they validated his view of himself (Foss, Foss, and Trap p, 2002). For Ryan one way to achieve a state of perfection was to be perceived a s normal. The one person who saw his potential perfection was his mom, and therefore, th e one place he was always the closest to being redeemed was in his motherÂ’s eyes. But, t he way others treated Ryan needs to be included in his move past his illness. Despite the fact that Ryan first had to deal with h emophilia and later AIDS, Jeanne, his mom, never treated him as an invalid an d never restricted his ability to do anything that other children could do. When I got home, Mom told me right away that I was grounded and could not go roller skating on Friday night. Â“What?Â” I blurted. Â“How come?Â” Â“You know how come,Â” Mom said. Â“I canÂ’t believe what you did I must have gotten four phone calls from people who saw you. Smoking is ba d enough Ryan, but with your lungsÂ…Â”(White, 1992, p. 124) Jeanne had grounded her terminally ill teenager bec ause the neighbors caught him smoking! This example represents the ways that Jea nne treated her son as though he was healthy, and this sense of being a normal teenage b oy validated RyanÂ’s image of himself. It also allowed him a time of stasis, or rest, from being ill or being seen as ill (Rueckert,
145 1963). And Jeanne repeatedly reinforced that Ryan was not special because he was ill, but rather he was special because he was Ryan. While Ryan found redemptive moments in his momÂ’s lo ve and acceptance, Jeanne found her own moments in her ability to see Ryan as a normal kid. By treating Ryan as she did Andrea, she could pretend that he r eally was not ill and going to die. This allowed her to move toward her own ideal of pe rfection, where the Whites would be a normal family like any other and deal with less d ramatic issues than life or death. In addition, the fact that Ryan was mature, giving, an d caring about others and dedicated to the fight for those with AIDS is also a confirmatio n that Jeanne raised Ryan to be a good human being. Even after his death, Jeanne continue d to seek redemption for both herself and her sonÂ’s memory. Â“I am especially glad that I Â’ve been able to carry on the work that Ryan started, educating people about AIDS. Besides being active with other AIDS education groups, I have started my own: The Ryan White FoundationÂ” (White, 1992, p. 286). This dedication to educating other about AID S is what Burke would call Â“stepping forwardÂ” (Burke, 1961). Jeanne could have withdraw n from the world and mourned the loss of her only son. But instead she took the opp ortunity provided by Ryan and continued to help others, much as Ryan most likely would have wanted her to do. The memory of Ryan and all that he represented both as an AIDS educator and her son appears to have provided Jeanne with a new directio n for her life. Andrea, RyanÂ’s sister, also found her path, and decided to study medicine at Indiana University. In honor of RyanÂ’s death, she gave up skating and found a new l ove in helping others (White, 1992). Once the White family left Kokomo and moved to Cice ro, Indiana, others too allowed Ryan to define himself as normal. Where hi s former school tried hard to keep
146 Ryan from attending, his new one embraced him. Bef ore school began, students came to his new home to provide assistance and to introduce themselves to him. They were not afraid of him, but rather wanted to make him feel a t home and welcome. Relocating to a new town was an act of redemption seeking as it all owed for a better life in general, but by treating Ryan as just another new student in the school system, the young people of Cicero provided another means for Ryan to see himse lf as a normal high school student. It also allowed others to see him as just another s tudent as well. Wendy and Jill brought me photos of all the teacher s at Hamilton Heights, so IÂ’d recognize them when I got to classes. The girls ca lled me every week just to say hi, and brought some of their friends over to meet me and tell me about what would go on at school. By the time school started, I would know about fifteen of the six hundred and fifty kids there. (White, 199 2, p. 173) Again, since being like everyone else was all that Ryan appeared to desire, these small acts of acceptance served to help him achieve his i deal. There were those who were inquisitive about him and that curiosity negated Ry anÂ’s attempts to be anonymous. However, there was no animosity, just students bein g nosy about someone whose name was well known. Outside of the scholastic setting, RyanÂ’s name was still known because of his medical illness. While he had been validated by so me peers and by his family, he had been rejected by some members of society. It was n ot Ryan who was being rejected, but rather his AIDS, and there were others who were bei ng singled out because of being ill. Â“There were so many TV lights in my eyes I couldnÂ’t see the crowd. But I could hear them. Thousands and thousands of people were clapp ing and cheering for me. And I
147 hadnÂ’t even opened my mouth yet!Â” (White, 1992, p. 1). This quote highlights one kind of redemption for Ryan, knowing that he was helpin g to de-stigmatize a disease that many did not understand. Regardless of whether or not a cure was found in time to save Ryan, his legacy would be that he helped re-define what AIDS was and who could become infected. Because Ryan was willing to morti fy himself, he could provide a path for others who were infected, and therefore his suf fering becomes worthwhile. Others would benefit from RyanÂ’s own pain and ostracism. The education of others allowed Ryan to find some explanation for why he was dying. In the end, it would mean that he did not die in vain because his information would l ive on. Thus far, the analysis has looked at the language i n the narrative itself to find the rhetorical redemption present in the text. It woul d appear that Ryan wrote his own story with what Perelman would call a universal audience in mind (1968). This would be what Ryan would envision as the perfect audience, or one that could enact the changes or goals that he would have liked to see accomplished. In t his case, the audience would comprise sympathetic readers who agreed with RyanÂ’s view of himself, who would think negatively of those who denigrated him, and who wou ld change how they viewed people with AIDS/HIV, thus allowing RyanÂ’s memory to live on. Ryan has incorporated many techniques of identifica tion throughout his narrative. The portrayal of his life encompasses many things t hat people deal with everyday. This includes wanting a dog, having a crush on a TV star getting caught smoking, fighting with his mother and sister, wanting to date and cru ise in his car, worrying about grades and prom, and caring about how others viewed him. Ryan constantly reiterated that he was a normal teenager dealing with teen issues, who just happened to have AIDS.
148 However, this is not what he wanted to define him a s a human being, so while his fame did come from his ailment, RyanÂ’s rhetoric indicate s his desire to be remembered as an ordinary person. When writing his book, his langua ge used specific techniques which indicated that his universal audience would be thos e sympathetic to his plight. For this reason, RyanÂ’s ailments are downplayed, while his f ight against discrimination for having AIDS was emphasized. RyanÂ’s ideal audience would a ccept this definition of Ryan as a fighter, but a reluctant one. Despite the fame Rya n received, the text does not portray him as abusing his celebrity. Actually, Ryan used his notoriety to benefit other people with AIDS/HIV, by showing others that infected peop le were human beings. So, by presenting all the ways that he was not different f rom others, RyanÂ’s rhetoric creates an image of being normal, noble, giving, caring, and l ike everyone else. Once the idealized reader has accepted RyanÂ’s self definition, an alignment can be created between the protagonist and the audience. This connection may generate feelings of sympathy and compassion for Ryan, and feelings o f anger and disgust with those who would blame Ryan for his condition. Thus, when one reads that someone stated that Ryan peed on the walls of the bathroom or spit on t he vegetables to spread HIV, that person will not believe that Ryan would do somethin g so deviant, and therefore find fault with the one who would begin and propagate such a r umor. This alignment further reinforces RyanÂ’s view of himself as normal because if such rumors were believed, then one would consider Ryan deviant and perhaps to blam e for his ailment. But, through his rhetorical use of identification, the audience may relate to and care for Ryan. In addition, a new definition of AIDS/HIV as a medical condition and not necessarily a condition brought on by questionable behaviors has been put f orth. RyanÂ’s textual portrayal of
149 himself as a victim allows for alternative definiti ons as to what it means to have AIDS/HIV. Thus, Ryan is redefined by this new defi nition. There is another universal audience to be found in RyanÂ’s narrative. While the story is clearly geared toward a pedagogical impera tive, there is also a message for those who find themselves HIV positive or living with AID S. RyanÂ’s story is one of courage and finding ways to cope with the medical or emotio nal issues of being diagnosed with a terminal illness. If a teen-age boy can cope, then these same strategies can be applied to others. Thus, if certain readers use Ryan as a tem plate for how to self-define, then they can attempt redemption as well. His narrative incl udes homosexuals, heterosexuals, IV drug users and other hemophiliacs. By incorporatin g these narratives, Ryan appears to be making a statement that AIDS/HIV is a medical condi tion, and how one became infected is irrelevant. This alleviates societal guilt plac ed on these individuals by those who would condemn or blame the patients for their HIV s tatus. This is a move toward a new understanding of AIDS/HIV. It allows patients to r edefine themselves and their medical conditions. RyanÂ’s text creates an alternative definition for h is ailment. Once the universal audience has done this, through the use of identifi cation and strong arguments, Ryan can persuade himself that he is not to blame for his ai lment. Herbert Mead (1934) has suggested that the self is created in the process o f communicating with others. Wood (2006) adds that people can either live up to these expectations or fall short of them. By creating arguments for a universal audience who wil l appreciate the descriptions that Ryan uses of himself, Ryan persuades himself that h e is the person the audience believes him to be. It could be that the Ryan White portray ed in the text is more a fictionalized
150 character than a representation of the real person. Without having known Ryan when he was alive, one only has RyanÂ’s self descriptions, n ot his authentic self. Assuming that the universal audience accepts this view, Ryan can conc lude that he truly was a normal teen. This is RyanÂ’s ultimate attempt at redemption: his rhetorical rebirth (Rueckert, 1963). It was not that he died for the greater good, but also that others could see him as a young teen fighting discrimination for having a misunders tood terminal illness. In the end, the ideal audience understands that Ryan was a victim o n all fronts. And when this is done, RyanÂ’s legacy becomes that of a normal teen who hel ped redefine an epidemic by being himself. Janice: The desire for rest Â“Each new medicine, each remission promises a happy ending yet unseen. Each relapse, each opportunistic infection portends an u nhappy ending yet unseen. In either case we inch forward and anticipate both the best and the worst, satisfied to just prolong the journey itselfÂ” Burns, 1995, p. 144 JaniceÂ’s narrative attempts to find redemption in s ome of the same ways as RyanÂ’s. Her wit and spirituality helped her to see through the darkness when needed. Also, the love of her family, her friends and Bill helped to move her forward in her fight against AIDS. But there are some major differences JaniceÂ’s ideal audience is more intellectual than RyanÂ’s might have been, and she i s not looking for others to see her as normal, but rather to see her as the outlier of AID S victims. She also spends a great deal of time addressing her ailments and crediting her s table health to her infectious disease doctor, Henry Frey. This section will explore the different ways Janice tries to find peace in her otherwise chaotic existence.
151 One only needs to read a few pages of JaniceÂ’s narr ative to appreciate her intelligence and sense of humor. After Bill died, Janice contemplated what the changes in her marital status would mean, since she was not a normal widow in that she was terminal as well. Â“Single, white, HIV+ female, two hearing aids, failing eyes, underweight, less than one hundred T-cells, Portaca th, widespread scarring, thinning hair, numb feet. Seeks man who should know better for po ssibly short-term relationship. Must be able to look death in the eyeÂ” (Burns, 1995 p. 247). This quote highlights JaniceÂ’s ability to move forward with her life. Th e quote shows that Janice has the ability to use humor to deal with the loss of her husband a nd she recognizes that her new identity is one that has limitations. For the first time in more than ten years, Janice has to redefine her place is in the world without Bill. The significance of this realization is that Janice is choosing to continue to live her life and not just waiting or hoping to die. Redemption for her would be to recover from some of her opportunistic infections, and to remain in stasis, not progressing closer to death. She is not looking for a cure anymore, but rather for a time of rest when she does not nee d to fight so hard. It is not until halfway through the narrative that Janice introduces the idea of spirituality as a way to deal with her ailments. S he discloses early on that her father became a religious scholar during his own midlife c risis, but Janice never explores her relationship with God until one day when lying in a hospital bed, contemplating the food. I trust in God. If some people can be reborn by fa lling down in a church aisle or stepping into a bath at Lourdes, why canÂ’t I be spi ritually rekindled in a beige hospital room in Yonkers, hooked to an IV, a televi sion speaker propped against
152 my head because the medicines I have taken to save my life have made me neardeaf? (Burns, 1995, 124) This is the most she expresses about her belief in the divine, but even when she is wondering about her relationship with God, her abil ity to use humor to asses the situation is evident. This declaration may be JaniceÂ’s way o f controlling what is most unpredictable: her health. By believing that God will take care of her, Janice metaphorically could be trying to reach the biblica l state of perfection, heaven. Rueckert (1963) stated that the goal of reaching heaven is o ne kind of redemption archetype, and for Burke it meant an expression of something defin ed as good and worthwhile. Perhaps Janice feels that by believing in something greater than herself, her suffering will have meaning beyond her physical pain. Or maybe it is t he idea that there is something better after this life that keeps her focused on getting t hrough each day as best she can. Janice also finds moments of rest when others accep t her for who she is and not the Â“AIDS girlÂ” (Burns, 1995). When Janice finally discloses to her family and friends that she has AIDS, her initial fear is that of reje ction and condemnation. Instead her loved ones rally around her and show their love and support. This acceptance appears to allow Janice moments of normality where she can be herself. It allows her a place to define herself as friend, sister, daughter, and not patient. Burke (1961) used the word stasis to mean a period of rest before another rede mption drama began, the term also has a medical definition of stopping a normal bodily fl ow (Burns, 1995. Because Janice has HIV, physiologically her body is in stasis as the n ormal function of the immune system has stopped. Since she was diagnosed, her life has been anything but restful as she and Bill have continued to fight opportunistic infectio ns continuously. Therefore, when Janice
153 is with her friends and family, she can momentarily feel like a healthy, normal person because that is how they treat her. Much of JaniceÂ’s life has been about Bill, so in ma ny ways he assists in achieving redemption. Through their life together, Janice h as been able to find who she is in relation to him. Even though she believes that Bil l infected her with HIV, Janice still finds him to be an amazing person, and his love for her has made her feel that she is special. I know he suffers; I know he must suffer because I do, and we have the same disease. Yet I do not see him cry at night when he thinks I am asleep. I do not see him grip the tableÂ’s edge when the reality of h is life overwhelms him. I do not see him wallow in pity or regret, take to his b ed and escape for a day or a week or a month as I have been tempted to do. (Bu rns, 1995, p. 157) Since Bill was diagnosed prior to Janice, his react ions to his ailments serve as a guide for how she should feel and react to similar informatio n. This means that Bill can then help her and be strong for her when she fights opportuni stic infections. BillÂ’s ability to defeat his own opportunistic infections provides Janice wi th the confidence that she can do the same. This allows her to move forward and not to g ive up after every new diagnosis. After all, Bill survived with five t-cells for year s. While he suffered many infections, he ultimately beat all but one (Burns, 1995). It is BillÂ’s unconditional love for Janice that pro vides her with the knowledge that she is loveable and deserves to live. The last wor ds that Bill spoke were, Â“Marrying Janice was the smartest thing I ever did in my life Â” (Burns, 1995, p. 232). This statement reinforces to Janice that despite how hard the last years of their life together have been,
154 that Bill would marry her again. By stating this t o Janice, Bill is providing her with the needed strength to know that she can have a life an d deserves a life after he is gone. Bill has given Janice the push forward so that she knows she did everything she could for him, but in the end, he had to admit defeat and sto p fighting. For Janice, these words allowed her to let Bill die and find his own path t o redemption in no longer being ill or having pain. While BillÂ’s spirituality was never m entioned in the narrative, he has found peace in the love of his wife. It should be noted that Bill and Janice had a medic al savior, a physician who allowed for periods of stasis between opportunistic infections and other AIDS related issues. This man was Dr. Henry Frey, or Henry as B ill and Janice called him because they saw him more often than many of their own fami ly members. Janice dedicates an entire chapter to this man whom she credits with pr olonging her life further than most AIDS patients at the time. Henry never had a probl em admitting that he did not have the answers, and this lack of knowledge would lead him to search until he found the answer. In the process, while many others would have prescr ibed all sorts of other medications, Henry would not experiment on either Janice nor Bil l. He would treat only when he found the right remedy to the infection (Burns, 199 5). This allowed Bill and Janice to have periods of time when they were not medicated a nd could engage in normal activities because they did not have to be hooked up to IV dri ps or admitted to the hospital for scheduled medication. These intermissions permitte d free time from being ill. Janice states that without Henry, she would have died long before Bill did. Some people think guardian angels have wings. I kn ow better. They have stethoscopes and amazing blue eyes. Henry is an ol d fashioned doctor in a world
155 where dividing a patient into treatable segments do minates, were a doctor is always supposed to remain at armÂ’s length. Instead Henry rolls up his sleeves and plunges ahead without feeling the consequences of caring. For Henry there is little separation between his personal life and his work, and this suits him. He was always willing to admit that he didnÂ’t know and was willing to do whatever was necessary to change that fact. (Burns, 1995, p p. 136-137) Henry clearly played a very important role in both Janice and BillÂ’s life. But JaniceÂ’s depiction of him as an angel paints the pi cture of Henry as being more than human, of being a savior, one who could help her ac hieve redemption for her suffering. This alleviation was not medical, but psychological in that Janice believed that Henry could save her, could prolong her life, and could m ake the quality of that life better. He gave her the confidence to trust him and to take me dical chances she might have otherwise rejected for both herself and her husband Her depiction of this doctor who always questioned and searched for answers also all owed her a symbolic rebirth after winning long battles with certain ailments. Â“The r ebirth process is a never ending one. Once rebirth is achieved, the cycle begins anew as the rhetor experiences pollution yet againÂ….Â” (Foss, Foss and Trapp, 2002, p. 211). Thi s is certainly true of both Janice and Bill because defeating each opportunistic infection due to HenryÂ’s analytical diligence allowed them a temporary break before the next batt le would begin. The pollution of the virus in their blood was always present, but Henry would find ways to subdue it so that Janice and Bill could attempt to live life with som e predictability. These brief moments of respite were small victories, but they allowed t hem both to survive, hoping that the extra time provided might find the ultimate redempt ion in a cure for HIV.
156 Like Ryan White, Janice has a universal audience t hat she wants to redeem her. While Ryan may have found contentment with anyone w ho agreed with his definition of himself as a normal teen, JaniceÂ’s redemption is mu ch more complicated. She in fact does not want to be seen as the normal AIDS patient but rather as the exception. Based on JaniceÂ’s writing style and self-character ization in her narrative, her text attempts to appeal to an educated universal audienc e, one who can understand why her story is important in the overall scope of AIDS edu cation. Janice is interested in teaching her readers something about AIDS, but it is not tra ditional information about T-cells, safe sex and clean needle rhetoric with which many are f amiliar. Rather, she is showing people through the details of her own life the hars h reality of living with AIDS while representing a minority in the grouping of those wh o usually become infected. On the one hand, Janice is using fear tactics to persuade educated, affluent, Caucasian, heterosexual married couples that even they are not immune to this virus. On the other hand, she is the epitome of denial that AIDS happen s to other Â“differentÂ” people. In order for her definition of herself and Bill to be seen as unique in their fight against AIDS, the ideal audience needs to accept that they are not typical, but yet they could be if certain information is ignored. Janice wants despe rately to be seen as atypical for her rhetoric to be successful and for her redemption of self to be achieved. Rueckert tells us Â“certain kinds of women are univ ersally used as symbols of the redemption archetype. Usually they are naively inn ocent, and often they become sacrificial agents or innocent victims; they are us ually naturally good and have always been and will always remain this wayÂ” (1963, p. 107 ). This quote summarizes Janice, but it may also highlight how she wants her universal a udience to see her. In order for her to
157 be redeemed and therefore alleviated of her guilt a t being infected with HIV, a virus traditionally associated with promiscuous gay men, prostitutes and drug users, she has to create an image of herself as a reluctant victim. The tone of her narrative is that of one who would rather not have to tell this story at all However, it is as though Janice feels compelled to share her experience with others so th at they know that all kinds of people do become infected with HIV. I fantasize about receiving a gift certificate for one day without AIDS, but even in my dreams I cannot redeem it. I once convinced mys elf that I would make Henry famous by being the first person cured of this dise ase, but I have stopped dreaming of miraclesÂ….perhaps it is the Ativan or t he hypnotic drip of the IV fluids that keeps away the panic, makes posthumous recognition somehow acceptable. (Burns, 1995, p. 116) This quote highlights how Janice feels about being known in death only, but yet she still chose to write her story for others to learn from. In order to further the argument that Janice is an anomaly in the greater AIDS narrative, and that she is mortifying herself for t he greater good, she introduces characters who represent more traditional AIDS victims. In pr evious chapters, gay men, women addicted to crack, angry HIV positive women, sexual ly promiscuous women, and the ignorant have been introduced as various examples i n this research. Their roles however are also important to JaniceÂ’s arguments of being a n AIDS outlier. By mentioning these individuals, she reminds about the stereotypes asso ciated with people infected with HIV or who have AIDS. Janice is not asking that her re aders buy into these views or even suggesting that she supports them. Rather she is p lacing them in her narrative for
158 comparative reasons. In contrast to these individu als, Janice and Bill are reinforcing the view that they are not to blame for their medical s ituation, and that their message about AIDS education is important. JaniceÂ’s text implies that she had a universal aud ience in mind while penning her story. She has attempted to create an image of her self she wants others to accept, and based on her persuasive strategies, her readers lik ely see her as an exception and not to blame for her status. Since Janice believes that h er audience will see her this way, she is now free to self-define in this manner. Thus, the ideal audience has provided Janice with the ability to find a new sense of identity, one wh ere her illness allows her to be altruistic in sharing information about a medical condition. Therefore, Janice has the potential to be redeemed. Her pain, suffering, loss of her part ner, and loss of her own life has provided others with a template of what it truly me ans to have AIDS and who can become infected. Janice and BillÂ’s deaths have not been in vain as they served a greater purpose: to take AIDS beyond a stereotype, beyond a medical condition, and to make it a reality for those who may view it as irrelevant. I n addition, they redefined the idea of blame associated with AIDS/HIV. The idea of a universal audience has given Janice one more significant form of redemption. Â“Instead of giving me permission to di e, the bookÂ’s completion has given me a renewed desire to live. The process of writin g showed me that limits can and should be pushed and that we should not always assu me we know what constitutes the beginning, middle and end of any lifeÂ” (Burns, 1995 p. foreword). This quote embodies why Janice chose to share the last years of her lif e with her readers. It is a reminder that
159 life is not always what it seems to be, but that pe ople should find the moments that define it and embrace them. Pedro and Judd: Change through education Â“IÂ’d like to thank Pedro Zamora. I know this may s eem redundant after this tale, but there is one more nod IÂ’d like to give to Pedro Aside from the friendship, love, and lessons, Pedro, thank you for giving me my voic e. Before writing and drawing this book, IÂ’d never truly found my way as a storyt eller. YouÂ’ve given me that. So, once again, thank you. ItÂ’s one more way that I ca n never repay youÂ” Winick, 2000, p. 181 Pedro and JuddÂ’s stories are a bit different since the narrative is told from someone close to the AIDS/HIV patient and not the a ctual person him/herself. This section will highlight how Judd attempts to redeem both himself and Pedro. In PedroÂ’s redemption, Judd can also find his salvation as Ped ro provides Judd with the tools needed to learn and grow as a person and AIDS educator. T here are some similarities with the other narratives in that there is a use of humor an d strong world views to help deal with the issues raised, but there is a strong focus on A IDS pedagogy in this story and a more modernized view of AIDS/HIV and those infected. Th e analysis will conclude by exploring who comprises the universal audience and what others are expected to do with the information presented in this text. Foss, Foss and Trapp (2002) have referred to redemp tion as a change in the self or a move toward a new self. Judd states that prior t o knowing Pedro, he had not found his voice as a storyteller. Therefore, this comic book narrative is JuddÂ’s attempt at redemption. The format of the text is important to analyze, too. There are many narratives written about those who are HIV positive or have AIDS. But this one is the only one done in comic book format. The fact that Judd published a comic book with
160 such large distribution is a form of redemption as he moved toward the goal that he set out to accomplish while in college (Burke, 1961). When Judd first started writing his comic strip, he was thrilled that it would be syndi cated. Unfortunately, soon after it was dropped and he was forced to return living with his parents and being unemployed (Winick, 2000). The fact that this book was publis hed and can be found in mainstream media reinforces JuddÂ’s identity as an artist and a lso as a writer. The argument could also be made on a larger scale that perhaps Judd va lidated the use of comic book formats to tell stories about unpleasant information. Inst ead of demeaning the topic of AIDS, it provided an original and interesting way to learn a bout someone with AIDS. The quote that introduces this section came from th e acknowledgement part at the end of the text. When Judd thanks Pedro for helpin g him to find his way as a storyteller, Judd is stating he has found a moment of redemption through Pedro and his bout with AIDS. As mentioned above, when Judd applied to be on the Real World it was because he had lost his focus in life. Meeting Pedro chang ed what Judd thought was important. He began to realize that educating others about AID S/HIV was his new calling, his goal in life. This growth included learning to see peop le with AIDS/HIV differently, but it was also about Judd seeing himself differently, sin ce he suffered guilt when he realized that he was not as open-minded and liberal as he on ce thought. Teaching others about AIDS/HIV allowed him to become the open-minded libe ral that he ascribed himself to be (Winick, 2000, p. 13). However, this self-discover y also gave Judd a deeper understanding of the importance of seeing people fo r who they truly are, and not judging them or defining them without any real knowledge.
161 The realization that a person is not what he/she o nce thought can be disconcerting. Judd was clearly upset to realize that he was not h appy living with someone who was HIV positive, as was highlighted in the previous ch apters. However, it was not easy for Judd when he adopted a new world view. This epipha ny exposed him to perspectives that he was not sure how to assimilate. JuddÂ’s new role as an AIDS educator simultaneously thrilled and scared him. Â“Unfortuna tely, Pedro was about to begin a national AIDS education lecture tour when he got si ck. He asked me if IÂ’d sub for him until he got better. I was leery at first but I re lentedÂ” (Winick, 2000, p. 134). JuddÂ’s fears are understandable since the people who booked the lecture were expecting a well-known figure with AIDS/HIV. However, PedroÂ’s confidence in JuddÂ’s ability to both represent Pedro and the AIDS campaign is a clear confirmation of JuddÂ’s new view of himself. Thus, JuddÂ’s new identity had been validated by the one person who had the credibility to do so. This backing then gave Judd the confidence he needed to deliver the lectures like someone who knew not only about AIDS education, but about what it was like to love and care for someone who was HIV positive. PedroÂ’s support was the first step in JuddÂ’s move forward as an AIDS educator. The next step had to come in the form of validation from those who attended these lectures. It could be argued that Pedro was biased since he was good friends with Judd or maybe Pedro had no choice and Judd was the best alt ernative. However, if others validated JuddÂ’s performance and heeded his message then his new identity could lead toward his definition of a new self. Â“After a lect ure, the teacher who invited me to speak took me aside. The older brother of one of his stu dents had died of AIDS just three months earlier and he wanted to know if I could tal k to Laura for a minuteÂ” (Winick,
162 2000, pp. 163-4). Judd sat with this girl and expl ained that he understood what it was like to lose someone you love. This girl is portra yed as sitting on his lap hugging Judd as she cries. For Judd this was one of the signs that the information that he was sharing was important and needed by others. This little girl m ay have represented all the other lives that he touched both with his information and his f riendship with Pedro. At the very beginning of the book, Judd has depicted many faces with comments that state things about Judd, Pedro, and the show. The implication i s that these people were moved by Judd and PedroÂ’s education about life with AIDS. Meeting Pedro may have allowed for JuddÂ’s redempti on by helping him find a new identity, a new purpose in life. However, this narrative is not only about JuddÂ’s redemption, but PedroÂ’s as well. Just as PedroÂ’s f riendship helped Judd, JuddÂ’s love and appreciation for Pedro validated that he was a norm al person with AIDS/HIV. Judd did not treat him any differently because he was infect ed, and this encouraged Pedro to be like everyone else. For example, while living in t he Real World house in San Francisco, Judd details a time where he and Pedro sat and watc hed Star Trek and discussed the attractiveness of some of the female characters (Wi nick, 2000). This incident of normality is one way that Pedro could find redempti on because it implied that people could treat Pedro like they did others who were not infected. For a small amount of time, Pedro could be just another friend hanging out on t he couch. This is what Burke (1961) would call a moment of stasis or rest, where one di d not have to feel guilt and could find peace. But, Pedro redeemed himself by sharing information with others. His mere existence as a gay, HIV-positive Latino sent a mess age to people about what this all
163 meant. Pedro most likely encouraged people to chal lenge their stereotypes about all three groups of which he was a member. Gay, Latino men w ere redeemed by identifying with Pedro because they could see themselves living as g ay men and still be culturally involved. People with HIV could see how others tre ated Pedro and could infer from this that they too would be accepted and loved in spite of their HIV status. People who knew almost nothing about AIDS/HIV could live vicariousl y through the show and get to know Pedro. By default they were learning what it meant to have AIDS/HIV. Chances are good that many of the people who watched the show h eld the same beliefs about HIV as Judd. But they too could learn from Pedro and see that people with AIDS/HIV are, indeed, people. Thus, Pedro could save lives, not just physically, but mentally and emotionally as well. PedroÂ’s family loved him very much. He initially feared their rejection and disappointment because they had such high hopes for his future. When he finally told them the truth about his HIV status, they embraced him with open arms (Winick, 2000). Early on in his diagnosis, Pedro thought he was goi ng to die immediately, but after surviving a bout with shingles, he realized that he might have many years left. This epiphany leads him to move forward. Â“I am sick now I am going to get better but it does not change the fact that something is wrong in side me. I should stop denying that and start doing something about itÂ” (Winick, 2000, p. 52). Pedro went to an AIDS organization and learned about life with HIV. Pedr o became educated, and this led him to find his path as an AIDS educator as he did not want others to give up as he initially had. The original acceptance from his family provi ded Pedro with the confidence he needed to move forward and fight. Pedro wanted to inspire this same type of self-
164 salvation in others who were HIV-positive. The fac t that hours after PedroÂ’s death, President Clinton mentioned his courageous fight ag ainst AIDS, validated the sacrifices Pedro made to spread the rhetoric of AIDS education (Winick, 2000). PedroÂ’s positive outlook on living provided him wi th a path toward redemption because it gave him a purpose, a goal to work towar d. If one had not watched the MTV show, then all that would be known about Pedro was what Judd narrated in his book. So, the image that is made permanent is the one that Ju dd creates about who Pedro was and what he stood for. Again, much like Ryan White in his own self-presentation, the audience can only go by what Judd says about who Pe dro was. Since the narrative is more pictorial than verbal at times, the images of Pedro also allow for his redemption. There is only one drawn section where it is clear t hat he is ill, and that is when Pedro is depicted with shingles (Winick, 2000). After this, even when shown in the hospital bed dying, he still looks the same as he has been drawn throughout the text. At the end, when Pedro died, Judd did not represent him as ill, but instead changed the foreground and background colors to show his physical departure, b ut never showed the physical demise. This omission allows for a redemption of PedroÂ’s me mory because one will not remember him as dying, but rather surviving with AI DS. Whereas Janice verbally painted a graphic image of what it was like to live with AIDS/HIV, Judd and Pedro did not focus on the ailments, and therefore the art is not about the violence of the death, but rather the end of PedroÂ’s battle with AIDS. In addition to PedroÂ’s physical representation, th ere is a character created through JuddÂ’s narrative. Pedro is shown to be funny, inte lligent, caring, and a good friend. When JuddÂ’s comic strip went into syndication for a second time while living in San
165 Francisco, Pedro not only lent Judd the money to bu y multiple copies of the paper, he also wrote him a congratulatory letter. Dear Judd, just a little note to say congratulation sÂ…I am so very proud of you. You are talented. You have worked hard and deserve to be made a big deal of. One day when you have your comic strip in every new spaper in the country and an animated series on television, I will say to tho se around me Â“not only did I live with him, not only is he my friend, but I lent him ten bucks to buy papers the first time he was published.Â” Then I will sit back and b ask in their envy and field questions. Pursuit of oneÂ’s dreams is the noblest profession. Seriously, you are wonderful. You deserve it and I am proud of you. I love you. Your friend, Pedro. p.s. You owe me ten bucks. (Winick, 2000, pp. 82-3) This letter highlights the kind of person Pedro was in his own words, ones he most likely never thought would be read by large amounts of peo ple. And yet, this letter shows Pedro to be a sincere and caring person. It reinfo rces the image of Pedro as an AIDS educator and explains why he chose to spend the hea lthiest moments of his life talking to others about AIDS/HIV. While JuddÂ’s narrative may paint a certain picture both physically and characteristically of Pedro, this le tter reinforces and validates the information Judd has shared with the reader. Thus, PedroÂ’s image in death has the ability to educate others because his credibility has been validated by Judd and by PedroÂ’s own words. Judd and Pedro are both redeemed because th e reader can see that both are honest, sincere, and telling the story as candidly and straightforwardly as possible. Perhaps because Pedro did not write this narrative from his own perspective, the need for others to redefine him as blameless in his method of contraction is not found in
166 the same manner as Ryan or Janice. Judd, as mentio ned above, is the catalyst for PedroÂ’s redemption as the image created is that of JuddÂ’s i nterpretation of PedroÂ’s life and death. However, there was still a universal audience in mi nd when Judd wrote this narrative. This group includes two sets of ideal audience memb ers. The first group would be those who read this narra tive and who are themselves HIV positive or have AIDS. The depiction of PedroÂ’ s life is that of someone who could plan a future and who would not give up. At the sa me time, the narrative shows Pedro struggling with his diagnosis and the new meaning o f his infected life. In addition, Pedro is shown dealing with his first ailments, telling h is family and friends, finding his new identity, and ultimately finding importance in ever yday activities (Winick, 2000). Thus, the message for this audience is: life does not en d with a diagnosis of HIV positive or even AIDS. Pedro is also shown having a close rela tionship with another HIV positive man and ultimately marrying him, in spite of their HIV status. PedroÂ’s acceptance by his housemates on the Real World and by a nation who watched him each week on TV, can redefine how others view those who are HIV-positive No one will deny that the stigma and the blame factor exist. However, with the educ ation that people receive today, the focus of that stigma and blame are different than f ifteen years ago. PedroÂ’s message provided a guide for others to learn how to live an d cope with this virus. A universal audience would see the arguments for living with HI V and not waiting to die of AIDS. There is also an education present in this narrati ve for those who do not have HIV or AIDS. This universal audience is represented by Judd. He was a member of this group until he met Pedro and learned what it meant to be HIV positive. Since both Pedro and Judd were AIDS educators, they focused their en ergy on addressing facts and
167 redefining misconceptions about the disease and tho se who are infected with it. The entire comic book is pedagogical. The idea is that someone with little or limited knowledge of HIV, perhaps even knowing only that pr esented in the media, would read this narrative and learn that human beings are not diseases, they are people who happen to be ill. In a perfect world, which is what Judd attempts to create with his book, the audience walks away enlightened, and therefore peda gogically redeemed by this correct presentation of information. The reader in questio n would then share the information with others, and eventually, there would be complet e understanding of what it means to have AIDS/HIV. If this universal audience receives the pedagogica l message, then Judd and Pedro can reach redemption. JuddÂ’s new focus in life wou ld be validated because people would listen and protect themselves and their loved ones from infection. Or, they would treat someone with AIDS/HIV as they would anyone else, an d not see the disease over the human being. Pedro can find redemption when this universal audie nce accepts the education presented in the narrative. It would mean that his prophesized future came to be. One will recall that when Pedro was born he was predict ed to save lives. This book, and PedroÂ’s own dedication to AIDS/HIV education, then would validate his very existence. By giving up the chance to fight his battle alone o r with close loved ones, Pedro gave up a great deal of freedom. If the education presente d here is internalized and used as it was intended, then PedroÂ’s sacrifice was worth the pric e. Thus the universal audience can redeem both the author and the protagonist, and any one else who is infected with HIV or has AIDS.
168 Pedro and JuddÂ’s narratives deal with enlightenment through education and knowledge. Both of their experiences provide infor mation so that others can understand what it means to have AIDS/HIV. The worst thing th at could happen would be a dismissal of both JuddÂ’s own attempt at redemption and PedroÂ’s sacrifice in the name of education, as not being authentic. Roger and Bob: The Redemption of AIDS/HIV Â“From the beginning, across many months, we have be en driven to seek the truth concerning the nature of disease in general, and AI DS in particular. We leave it to the readers to determine how successful we have bee nÂ” Owens, 1997, n.p. While there are some redemptive similarities betwee n this narrative and the ones previously analyzed, there is a bigger issue presen ted here. Thus far, the narratives presented have a pedagogical quality in that they s eek to educate an audience about AIDS/HIV. The previous narratives also redefine wh o can become infected and what life means once infected. Bob and Roger, however, are s eeking to completely change peopleÂ’s beliefs concerning what AIDS is and what i t can and cannot do to the body. Their narrative has the potential to take AIDS/HIV from being a stigmatized, terminal ailment to a breakdown of the body not caused by a transmitted virus, but by oneÂ’s own abusive actions. This last story will explore how both Roger and Bob attempt to rhetorically redeem one another, and how through th eir own personal and medical growth, they have validated the view of alternative medicine and the dissident view of AIDS/HIV. The entire narrative is about Dr. BobÂ’s goal of red emption. While for Roger his redemption is truly about a new life, BobÂ’s is more about a journey that begins with
169 questions about the efficacy of traditional medical practices. Any time Dr. Bob tried something new with Roger and it worked, these were redemptive moments, or what Burke (1961) would call steps that moved forward. Continuing with BurkeÂ’s definition, these little redemptions were short-lived and fleet ing because something would always happen to challenge that moment of perfection. For example, Bob decided that Roger needed to quit drinking caffeine. Roger became vio lently ill and almost died because giving up caffeine was more difficult than either h ad anticipated (Owen, 1997). Roger survived this ordeal, and ultimately overcame this addiction, one that Bob believed may have contributed to the breakdown of the immune sys tem therefore resulting in AIDS. This incident is a small medical redemption toward RogerÂ’s full recovery from AIDS. However, the risk that Bob took to try to save Roge r was worth it in the end. Based on this idea of ridding the body of addiction s and toxins, Bob decided that he needed to change his medical focus. In that moment I pledged the rest of my professiona l life to the purpose of teaching my patients how to live so as to maintain their bodies in a constant state of health. At that time I did not know how I would do this or how even to begin. But I vowed that I would begin to drug less and les s and to counsel more and more. (Owen, 1997, p. 107) This quote indicates that Bob had a change of heart in that he began to see the merits of different or holistic treatments. This i s a step forward for him because soon he would apply this new world view not only to saving RogerÂ’s life, but to dealing with his other patients as well. Any time he implemented th is new ideal, and the idea was appreciated and/or enacted, Bob was redeemed for ta king that risk. These moments,
170 when they occurred were small, and for every victor y, he suffered more defeats, but Bob is doing more than just saying one needs to live a healthier life, he bet his best friendÂ’s life on it. RogerÂ’s redemption is also about taking a medical r isk, but it was not the soul searching journey that it was for Bob. For Roger, this battle was truly life and death. While every medical milestone brought Dr. Bob one s tep closer to redefining what it meant to practice medicine, it was RogerÂ’s sacrific e and risk that allowed this process to take place. His body was broken and beaten, but on the off chance that he might survive, Roger became a guinea pig and gave up caffeine, sal t, solid foods, and believed that Bob would save his life. In the end, both Roger and Bo b had a fleeting moment of perfection. For Roger this redemption was to find himself whole again, healthy, and AIDS/HIV free. Today I have never been healthier or more energized My muscle tone and reflexes are excellent and I have no difficulty wit h my work or sleep patterns. Thanks to a healthy and well-balanced diet, I weigh the same as I did when I was in high school. All in all, one could not tell tha t I had ever been sick, much less struck down by a disease that I no longer fear. (O wen, 1997, p. word from Roger) This release from illness gave him a new life, and a new identity as the man who survived AIDS. The quote implies that one has reached his/h er healthiest potential when one has returned to the health status of an adolescent. Rog er has done this, and in the process has redefined what it means to have AIDS. The redempti on is that Roger is alive ten years after his initial diagnosis, something that is rare even today with all that is known about AIDS/HIV.
171 However, this narrative is not only about Roger and BobÂ’s salvation, but the redemption of a theory of medicine as well. Bob po ints out that many physicians were skeptical of alternative treatments, and made comme nts about the potential legality of such misdiagnoses (Owen, 1997). This story is one attempt to prove that alternative medicines do work. The quote used above states tha t Roger is in excellent health, and he achieved this status by holistic means. Bob remove d the toxins from RogerÂ’s body not by giving him prescription medications, or blood trans fusions, or surgery, but just by removing solid foods from his diet and providing hi m with nothing more than water, fruit/vegetable juice, care and some sunlight (Owen 1997). Since no one doctor or pharmaceutical company has been able to claim they have cured or found a cure for AIDS/HIV, the fact that Bob and Roger had was monum ental. This provides legitimacy to alternative means of treatment, yet at the same time it embarrasses traditional medicine. In comparison, traditional medicine is c haracterized as small minded, evil, and harmful to the body. In line with the rhetorical redemption of holistic approaches to medicine the entire classification of AIDS as put forth by medical esta blishments around the world has been redefined. This narrative has dismissed the view t hat AIDS is brought on by a virus which breaks down the immune system allowing certai n opportunistic infections to take hold and eventually kill the patient. This is not something that can be transmitted from one human to another, but rather it has been recont extualized as something that humans do to themselves or from the advice of those in tra ditional medicine. This is not to find a new way to blame the patient for his/her condition, but rather to show how certain information received about the correct treatment of the body and ailments is at a
172 minimum erroneous and potentially deadly. The only fault the patient has in this new definition of AIDS is listening to physicians and b eing unaware of alternative views of medicine and health. Thus, if the definition of AI DS has changed and been revised, then so has the meaning of being an AIDS patient. This person no longer needs to feel guilty about being infected, and no longer needs to worry about being terminally ill either. This offers hope and a new identity to those who have be en labeled AIDS patients. A huge step forward has been taken by this narrative in pr oviding a new way to look at those who were dying of AIDS. Of course, the text made it cl ear that some peopleÂ’s immune systems would be too badly abused to recover, but i t offers something to look forward to and hope where before there was none. Not only has AIDS been redefined, and those with it offered new hope, but this entire narrative lends credibility to the dissident view of AIDS. To recap, this is the view held by some physicians, scientists, PhDÂ’s, and oth ers who do not believe that HIV is the cause of AIDS, and that AIDS is a systemic breakdow n of the immune system. This outlook suggests that HIV is a harmless passenger v irus because it is in the retrovirus family, which is one that has never been found to h arm humans (Duesberg, 1992). Until RogerÂ’s story, the belief that HIV did not cause AI DS was a theoretical argument. While many people had died of AIDS who were HIV positive, the dissidents had only scientific theories that many people who have HIV may never pr ogress to AIDS, or that many people have AIDS, but not HIV. This very narrative if it is valid, is proof that AIDS is not terminal nor is it linked to HIV in a negative way. Rather, AIDS is a potentially reversible condition brought on by abuses to oneÂ’s body. Based on this story, as told by
173 Bob Owen, the dissident view of AIDS/HIV has been v alidated and rhetorically redeemed through an actual case study where Roger w as allegedly cured of AIDS. Based on the way the book was written and the chara cters depicted, there appears to be a specific universal audience in mind. If on e were truly supportive of traditional medicine and believed that anything other than that view of medicine was irrational, this book would have no impact. Instead of persuading t hat person, the narrative would only reinforce the currently held beliefs, and further j ustify why holistic medicine was an unfounded idea created by questionable medical prof essionals. The universal audience sought is the kind who would be open and willing to explore non-traditional means of curing illness. For those who were opposed to hol istic medicine, Dr. BobÂ’s own hesitancy about departing from what he had himself practiced for years, could serve as a guide. Dr. BobÂ’s own slow conversion can be the at tempt at redemption for those who are seeking to find the truth about medicine and di fferent approaches to it. Once these people, the skeptics and the more open-m inded, see the benefits of alternative medicine and reject the establishment v iew, then Bob has found the path to his own redemption. It was presented in his story that Bob struggled with leaving his training and moving into uncharted medical territor ies. One must assume that he had doubts, even after Roger recovered and he was force d to move his family to Africa. However, if he believes that his universal audience supports his medical conversion and the salvation of Roger, then Dr BobÂ’s sacrifice, in cluding changing his medical identity, was worth it. The end result is that the universal audience will believe holistic approaches to medicine do work and that RogerÂ’s cur e is a direct result of a rejection of traditional medicine and an embracing of alternativ e approaches.
174 One has to wonder why more people are not aware of RogerÂ’s miraculous recovery from AIDS. It would seem that this inform ation should be known by a great many people, and yet only the readers of this narra tive know of this Â“cure.Â” However, while some may question the veracity of this narrat ive and the authenticity of the claims made, both Bob and Roger can find their redemption in those who do believe that such a healing can and did occur. Perhaps the goal of thi s narrative might have been a journey from believing in traditional medicine to questioni ng that belief, to ultimately being willing to accept a different view of treatment. R ogerÂ’s recovery from AIDS is a byproduct of the bigger message presented about the power of the body to heal itself and the questionable things done in the name of medicin e. Therefore, while it would be nice to believe that people with AIDS have some hope, th e path to redemption is created through the universal audience when they believe th at this narrative is possible, and that holistic approaches make it so.Chapter summary This chapter has explored the Burkean concept of re demption, adding to that definition the idea of the universal audience as a way to provide an identity to the authors/protagonists of each narrative. Each story had its own way of attempting to achieve redemption. Ryan is rhetorically redeemed because others begin to treat him as normal, but he also found salvation in his sense of humor and his spirituality. The universal audience allowed him to see himself as he wanted others to see him, thereby allowing Ryan to live as a young teen who just happ ened to have AIDS. Janice found momentary redemption in her sense of h umor and her spirituality, but she also found it in her interpersonal relation ships differently than Ryan did. In
175 addition, her path toward redemption occurs through the ideal audience when others recognize that Janice and Bill represent the minori ty of those infected with AIDS/HIV, but that number could grow if people do not see tha t AIDS can and does happen to people who do not fit into neat categories assigned by the CDC. Pedro and Judd seek redemption through their great friendship. JuddÂ’s new career as an AIDS educator served to honor PedroÂ’s memory and at the same time commemorate his image. Pedro provided an education for others and allowed them to see what it was like to live with HIV and who deals with this everyday. Their universal audience is comprised of those who are willing to e ither heed their message or spread the message to others. The ultimate redemptive act for Pedro would be to have his experience save another from infection. The chapter ended with the rhetorical redemption of Roger and Bob. Roger was given a second chance at life, and he went to Afric a to share his experience with others who would be receptive to his rhetoric. Bob could find redemption not only because he saved RogerÂ’s life, but also because he found a new calling in a different type of medicine. Their universal audience would be those who would challenge traditional medicine and seek out alternative treatments for he alth-related issues. While the veracity of the narrative may be questioned, the power of ho listic medicine is explored. Roger was ill with some type of disorder, and apparently holistic approaches saved his life. The protagonists/authors of these narratives found the path to redemption in many ways, but there is also redemption to be found for the audience. Each text has the ability to change a view or to reshape the way something is defined. AIDS/HIV is not an easy ailment to live with, and these stories remind of t he human side of the epidemic. Each
176 protagonist represents a statistic in AIDS research but their stories make that number a reality. Therefore, the ideal audience can grow fr om each narrative and can learn what it means to be infected with HIV or to have been diagn osed with AIDS. For a brief moment, the readers can give these authors/protagon ists their lives back, because other than Roger, all have passed on.
177 Chapter Six: Concluding Remarks December 1st is World AIDS day. It is a time to reflect on the past of this epidemic as well as the present. It is also meant to provide hope for those who find themselves diagnosed each year; a reminder that the y are not alone and that there are people out there who care and want to help. But th is day also serves as a warning that despite all that is known about AIDS/HIV, the numbe r of new infections continues to grow. Worldwide statistics reinforce the message t hat this pandemic is still very much with us. Forty million people are living with AIDS /HIV (UNAIDS, 2005). Their voices need to be heard so others can remember this diseas e can and does happen to anyone. The four narratives analyzed in this research show some of the ways AIDS/HIV can impact the lives of different kinds of people. While some will look only to the statistics to explain who becomes infected, others will realize that statistics can only tell one side of the larger AIDS/HIV story. Despite the twenty plus years since the first AIDS case was diagnosed, the stigma of having this ailment has remained. While the hysteria about the epidemic has subsided in some ar eas, the belief that people are to blame for their condition remains in the minds of s ome Americans (Stine, 2002). These narratives show the lives of those who deal with th is ailment and their responses. The analysis began with the guilt each suffered, follow ed by how they purified that guilt and concluded with redemptive acts in the form of closu re. This last chapter will provide a summary of the findings for the chapters exploring guilt, purification and redemption, and will close with implications and directions for future scholarly research in this area.
178 Guilt Burke (1984b) stated that guilt occurs when one fee ls bad about oneÂ’s location on the hierarchy of society. He also added that socie ty suffers from what he called categorical guilt, which is like the concept of ori ginal sin in Christianity (Burke, 1984b). Even though people with AIDS/HIV have a terminal di agnosis, they are often placed on the lowest rung of the illness hierarchy. In addit ion, anytime someone is ill, they are automatically lower on the social hierarchy of bein g healthy and fit. Ryan WhiteÂ’s narrative highlights how his illness l ed to his being socially ostracized by others. It began with his hemophilia a condition of the blood, and was later compounded by his infection with HIV. All Ry an wanted was to be like other kids his own age. Janice found herself infected by her husband, Bill Like Ryan, her guilt also stemmed from the breakdown of her body, but in this case it had more to do with her not achieving what she wanted to in life. As a Caucasi an, educated, heterosexual woman in her early 20Â’s, Janice Â“should notÂ” have been an AI DS statistic, but rather a young wife with a career and a future including children. Ins tead, she found herself fighting opportunistic infections and hoping to live until t hirty. Bill felt guilt that he had infected his wife, even though he did not know he was HIV po sitive until after they were married. Pedro and Judd suffer different types of guilt. Pe dro is HIV positive, and therefore, feels he has let his family and his cult ure down. Judd believed that he was open-minded and liberal, but when faced with the po ssibility of living with someone who was HIV positive, Judd realized that he held common stereotypes.
179 Roger and Bob deal with a unique form of guilt sinc e both are physicians. Roger had AIDS as a result of using IV drugs during the V ietnam war. His status on the hierarchy of guilt is low because he is a recoverin g drug addict, who also found himself infected with HIV. Bob, on the other hand, is high on the ladder of status because he is a successful physician. However, as he delves into t reating RogerÂ’s ailment, he soon learns that his own medical beliefs may be more dangerous than any illness. In order for others to accept the guilt felt by the protagonists, identification, or a common bond formed through language between people, must occur with the audience (Burke, 1969). Each of these protagonists needs an other to relate to them so that the guilt is understood, and one can envision and understand the bigger societal issue that is presented. This means that the origin of guilt com es from the social view of AIDS/HIV, and therefore, creates the individual need for each of these authors to defend their AIDS/HIV status to others. By identifying, or seei ng themselves in these protagonists, others can then understand why Ryan, Janice, Pedro, Judd, Roger and Bob had to deal with the need to seek redemption. The analysis of guilt in these four narratives impl ies that these protagonists feel somehow responsible for the breakdown of their bodi es and the resulting social repercussions. By using BurkeÂ’s concept of guilt a s part of the redemption drama, one can believe that the guilt each suffered began with the social implications of being ill with AIDS/HIV It was then internalized by each in fected person to create other issues associated with being placed lower on the hierarchy The fact that any of these books were written suggests a need to defend being infect ed with AIDS/HIV and as such, a way to redefine that guilt through the modes of purific ation.
180 Purification Burke (1969) continues his dramatistic analysis wit h the concept of purification, which can be divided into two parts, mortification and victimage. Rueckert (1963) defines mortification as self-sacrifice or suicide, and victimage as murder or the sacrifice of the other. Another term for victimage is scapeg oating (Burke, 1969). In each of the narratives analyzed, both forms of purification are present as is the continued need for creating identification with the ideal audience. Ryan White was scapegoated by many in his hometown, who sought to accuse him of some type of evil that explained why he was infected with AIDS. These individuals created rumors about his sexuality, his attempts to Â“spreadÂ” the virus to others, and made comments about his motherÂ’s lack o f parental responsibility as reasons for his ailment. Despite the hostile reactions fro m others, Ryan took the moral high road and mortified himself by attempting to educate othe rs about his condition. By making the choice to publicize his ailment, Ryan gave up h is anonymity and his ability to be the normal teen he desperately wanted to be. Janice scapegoated others who either were ignorant about how one became infected with HIV or those she felt lived a risky l ife-style. In addition, the analysis of her narrative showed she blamed Bill, because she belie ved he infected her with HIV. Janice mortifies herself by her detailed disclosures of he r body being torn apart by AIDS. In addition to this, Janice deals with her anger at Bi ll for infecting her and her anger at her own hesitancy associated with not dating him when t hey first met. JaniceÂ’s willingness to share her life for the benefit of educating othe rs is the major way she mortifies herself.
181 In PedroÂ’s experience with AIDS, he became an AIDS educator, choosing to make his fight with AIDS known, thereby denying him self the peace of being with his family and friends. Judd mortified himself by bein g honest about his initial views of AIDS/HIV and admitting that he was worried about kn owing and living with someone who had HIV. However, victims of AIDS/HIV are not scapegoated in this text, rather through PedroÂ’s ordeal and JuddÂ’s telling of the na rrative, people learn about AIDS/HIV. Roger and BobÂ’s story is a bit different than that of the other narratives, but despite this difference, purification of both men i s still present. Bob scapegoats the traditional medical establishment by blaming the in stitution for creating the ailments that make up a diagnosis of AIDS. By making such a clai m, Bob is willing to write about his new hypothesis concerning the current medical syste m, at the risk of losing readers. In addition, Roger allows himself to be a guinea pig a s Bob tests out this theory. BurkeÂ’s concept of identification plays a large par t in whether or not an audience is willing to accept the protagonistsÂ’ scapegoat an d how they choose to mortify themselves (1969). In order to find a common bond each narrative must prove why some serve as scapegoats and why each protagonist has mo rtified themselves. Without this bond, one might not see the purification that took place, which would then allow the authors to shed their guilt and attempt to achieve redemption. Redemption The protagonists are unique in that their quests fo r redemption are the most important part of the journey. They are unique bec ause their terminal status means they have a brief chance to achieve redemption. For mos t, while the little redemptions each achieves may be fleeting, its the overall redemptio n which needs to be successful since
182 they only get one chance to plead their case. Burk e (1961) defines redemption as a move toward something, but it can only be reached once t he individual has suffered guilt and purification for only then will the person know he/ she has achieved redemption. It is a unique experience and also a subjective one as defi nitions of what constitutes redemption differ. Foss, Foss, and Trapp (2002) expand on the Burkeian definition and add that to find redemption one may find a new identity or a ne w perspective on the world. The narratives represent this forward movement which en compasses finding a new self and learning to see the world in new ways. Ryan White could find his path toward redemption in all those who could see him as the normal teenager. Both his mother and his si ster refused to show him preferential treatment and by doing so allowed Ryan to have the chance to be a normal teen. In turn, both his mother and sister attempted to find their own redemptions because RyanÂ’s strong, positive spirit taught them about themselve s and to handle certain issues. In addition, Ryan found a way to see the good that cou ld be done because he had AIDS, and chose to define his experience in a positive way in stead of a negative one. Janice had a hard time seeing the benefits to being HIV positive, but she still managed to redefine her ailment by having a sense o f humor about her opportunistic infections. She also found her spirituality as a g uide for living her life as someone with AIDS. Much like Ryan, she found moments of rest wh en people saw her for who she was, and not as Janice, the girl with AIDS. Janice found her path toward redemption, however, in her love for her husband, Bill. Pedro and Judd found redemptive acts in their frien dship with one another. JuddÂ’s purpose in life did not become clear to him until after he met Pedro and realized
183 that he needed to educate people about AIDS. Pedro appreciated that Judd saw him for the person he was, and not as someone with AIDS. J uddÂ’s loyalty, friendship, and respect gave Pedro the strength to keep fighting an d to make the point that people with HIV are everywhere. Both Judd and Pedro have posit ive outlooks on life, which allowed them to have a perspective about AIDS/HIV that they could use to educate others. Roger and Bob found moments of redemption in challe nging the medical establishmentÂ’s definition of AIDS/HIV. Bob, throu ghout this narrative, slowly changes his view of how to treat patients and also what it means for a patient to have AIDS. These are small steps that rhetorically lead to a r edemption of how to define AIDS/HIV. RogerÂ’s overall attempt at redemption is found in h is being cured of AIDS, and also discovering a new life for himself, something he th ought would never be possible since he was diagnosed as terminal. Identification was important in the first two parts of the redemption drama, guilt and purification, so that the perspectives of the p rotagonists could be better understood. For this last part, a different relationship must b e established between the protagonist and the reader. The authors need to find a way to prom ote redemption in the minds and perceptions of those reading their narratives. Per leman offers that rhetors can create arguments for a universal audience in such a manner that the audience is persuaded to accept that view and no other (Foss, Foss and Trapp 2002). These protagonists create an audience with their rhetoric that by the end of eac h narrative. The ideal reader is likely to conclude that the infected person is not to blam e for his/her status, but rather that the person is ill and suffering. By having an audience accept this view, the protagonists can
184 then see themselves the same way, as not being to b lame for their medical conditions. This lessens or removes the social stigma of having AIDS/HIV. Implications, limits and future research Bobbitt (2004) is one of the few researchers who us ed BurkeÂ’s idea of the redemption drama in its entirety. Other scholars a ppear to use bits and pieces, but do not carry the analysis through from guilt/pollution, pu rification, and redemption. It appears that BurkeÂ’s concept has not been used to analyze A IDS/HIV rhetoric or any other heath communication topic. This drama has allowed for th e analysis of how people with AIDS/HIV use narrative to redeem and redefine blame issues associated with the ailment. By creating identification with the audience and, i n turn, creating that universal ideal audience, the authors of these texts have tried to find a path toward redemption in their lived experiences and have had the opportunity to r edefine a life with AIDS and what it means to be infected. Each narrative implied that the best course of action is to be protected, but at the same time reinforced that the se were people suffering with a disease they did not want. Instead of offering statistics, they offered up their experiences. These stories are known as illness narratives. The se are first person accounts of dealing and living with illness. This research add s to the body of knowledge by reinforcing that being sick is not just a physical issue, but an emotional, spiritual and social one as well (Frank 1991, 1995). These prota gonists are not telling a watered down version of what it is like to have HIV or AIDS; som e of them are very detailed in what they deal with on a day to day basis. On some leve l, the motive is pedagogical; it is intended to educate and perhaps scare one into bein g safe. It also reinforces that anyone can become infected with HIV if sexually active, an d therefore those who are currently
185 infected are no different than anyone else. All of this is done through language. These narratives use language as a way to communicate the ir lived experiences. There are meanings created not only about being ill, but abou t what it means to be ill with a disease often labeled as a plague. In this case, the mediu m of choice is written communication, but found within the words one can analyze the guil t, purification, and attempts at redemption to explore the meanings being presented. BurkeÂ’s concept of the redemption drama works with AIDS narratives because of the way AIDS/HIV has been contextualized in society since the first case in 1 981. Since the beginning, the language of blame has been employed, pointing fingers at hom osexuals, IV drug users, and Haitians. The phenomenon of blame indicates the fe ar and guilt that Americans may feel about the prevalence of AIDS/HIV. BurkeÂ’s rhetorical tools found in the redemption dr ama allow for an analyst to explore where the guilt is found in the language us ed to create meaning about AIDS/HIV. Interestingly, it is found in those who are ill, bu t it is also prevalent in society as well. The analysis of this language, and the ability to f ind it in texts, allows for a new meaning to be created about how AIDS/HIV is and can be fram ed rhetorically. The fact that one feels the need to defend being ill is an indication that there is a language that needs to be explored in more detail. It needs to be noted, however, that the narratives for this research were chosen within a certain historical context: Ryan represen ted the early 80Â’s; Janice represented the mid to late 80Â’s, Roger and Bob represented the mid 80Â’s to early 90Â’s and finally Pedro and Judd represented the 90Â’s. It is now 200 7, and while many of these stigmas still exist for people with AIDS/HIV, there are new issues that will change the context of
186 AIDS/HIV narratives. The CDC (2004) states that th ere has been an increase in seroconversions (people testing positive) in the Un ited States over the last several years, and the reasons for this are twofold. First, some believe that with the advent of new dru gs, HIV can now be controlled and is therefore no longer a terminal condition. F or a select few, the protease cocktails do keep the virus from progressing to AIDS, but not indefinitely. However, it would appear this erroneous belief may cause some to take risks that they might not otherwise have taken. The reality is that many cannot take t hese cocktails due to the toxicity of the medications or because the virus mutates and become s resistant to the medications (CDC, 2004). Second, it appears that there is a rise in infectio ns among homosexual men. This may be a surprise given that in the past, gay men w ere very vocal about AIDS/HIV and prevention. However, this new increase in homosexu als is a bit different than it was in the 1980Â’s. It appears that minority men are livin g something called the Â“down low lifestyleÂ” (King, 2005). This means that these men are having sex with other men and then going home to their wives/girlfriends and not disclosing these sexual acts. In addition, these men do not define as homosexual (ga y) or bisexual, but rather believe their identities are heterosexual or straight (King 2005). This not only causes an increase in what the CDC labels as homosexual statistics, bu t these unsuspecting heterosexual female partners are also showing an increase in ser oconversion. The statistics complied by the CDC support this as there has been an increa se in cases of HIV among African American and Hispanic women (2004). This new trend in AIDS/HIV numbers suggests that new narratives about AIDS/HIV will be written, but the stigma may still exist.
187 While AIDS/HIV is terminal, the reality is that man y people suffer from STDs that also carry stigmas and fear of rejection. Thi s may provide an explanation as to why these diseases continue to spread since people fear disclosure. BurkeÂ’s redemption drama might provide new insight into why people do not us e protection and why people do not disclose their STD status (e.g. herpes, Human Papil loma Virus (HPV) or HIV). Expanding on the idea of using Burke to analyze med ical ailments, his drama may also shed new perspectives on why people share their ill ness narratives at all, even for ailments that do not carry a stigma, like diabetes, cancer, and heart disease. There are other non-STD related topics that are sti gmatized, which could also be analyzed rhetorically for why people share these na rratives and what purpose such disclosures serve. Each story told by someone will be read and judged by another. That reader has the ability to attempt redemption by cha nging his or her view based on learning new information, and that could change a v iew of the world as well. Narrative allows for an audience to experience the protagonis tsÂ’ life. BurkeÂ’s drama allows one to analyze the language so that the guilt can be uncov ered, purification can take place and redemption can be found. While BurkeÂ’s drama allows for an analysis of the a ttempted AIDS/HIV redemptions in each of these narratives used, it ne eds to be highlighted that there are multiple redemptions that may also be taking place. In this research, issues of race, sexuality, class, and gender were not the main focu s and therefore were excluded from the analysis. A study of the language which includ ed these aforementioned topics, might produce a different result, one that showed that AI DS/HIV was a secondary redemption from other societal prejudices. This returns to t he early point made about these
188 narratives being situated within a specific histori cal context. While it might have been that at first having AIDS was reason enough to blam e the patient, now it may appear that there is an intersection of multiple hierarchies. In her narrative, Janice used an example about a play that she and Bill saw, where the gay m en were seated closest to the stage, and everyone else sat further away. This is a nice analogy to the multiple hierarchies in question. It shows that there are multiple levels to being HIV positive. A homosexual black man not only has to deal with being positive, but he also has to deal with issues of sexual orientation and race, which would provide a very different rhetorical situation than that of a heterosexual Caucasian woman with the sam e ailment. One would need to look at more contemporary narratives to see if issues su ch as the ones mentioned above address these different redemptions. As stated in chapter one, statistics about disease do not show the nuances of what it means to be ill. Illness narratives can fill in the blanks and take the definition of disease from a medical condition to a more humanize d story of that ailment. The narratives show how complicated it is to be infecte d with AIDS/HIV. They provide a glimpse into the complex backgrounds of each person Textbooks about AIDS/HIV can provide a list of the opportunistic infections asso ciated with AIDS and they can supply an anecdote of the discrimination people with AIDS/HIV suffer, but they cannot tell the entire story. Ryan, Janice, Pedro, and Roger show what it is like to have AIDS. While reading these narratives, one can suffer along with them, feel what it is like to be ill with a stigmatized ailment, and can begin to comprehend the complications of their daily lives. We come to identify with them not as patients, but as human beings struggling to make sense of their lives.
189 This is the power of narrative and communication. Reading about first hand accounts of people who are ill provide information that medical textbooks cannot. They show us the story that happens in between the defin itions and the statistics. They show us real people who deal with this. Narratives prov ide us with what Burke called equipment for living (1969). While the narratives here were about AIDS/HIV, there are narratives about ailments that provide readers with insights into other medical conditions. However, the amount of literature about living with STDÂ’s is limited. It appears that either people do not want to talk about having herp es or HPV or they feel there is no audience for such literature. People with cancer a re not blamed for their cancer, but those infected with STDÂ’s, ones for which there is no cur e, are often labeled and stigmatized for their conditions. Until such issues are openly discussed and explored, the stigma will continue. Statistics show that many Americans are infected with these two viruses, and yet many are not willing to openly talk about these issues. At one point in time, the same could have been said about cancer. Now, there are many narratives about coping with cancer. Those illness narratives are important sou rces of information both for those who are diagnosed with it and for their loved ones. Il lness narratives help us reframe illness in a way that provides a context for discussion. They create a forum for a dialogue and remind us that we are not alone in our suffering.
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About the Author Andrea Zolnier Thelen, Â“AdiÂ”, completed her undergr aduate degree in Communication at the University of South Florida. After working for IBM for two years, she returned to school and completed a MasterÂ’s Degree in Communica tion at Emerson College in Boston, MA. Adi returned to the University of Sout h Florida to work on her PhD in Rhetorical Studies and Health Communication. She c urrently resides in Charlotte, NC and teaches fulltime at Queens University, a privat e liberal arts college located in Charlotte.