The Sub-Culture Of AIDS

by Chip Heim

To effectively minister to people with AIDS, we must attempt to understand what it is like to live with the disease. What are the unique challenges and problems associated with AIDS? How does the disease affect a person's relationships? How does an HIV+ person view death? What intentional and unintentional social problems are connected with AIDS? What characterizes this particular sub-culture?

The Dangers of Assumptions
These questions are important because it is difficult to understand what life is like for another person. Consider the experiment directed by D.L. Rosenhan and reported by him in 1973 as Professor of Psychology and Law at Stanford University. Rosenhan and seven other colleagues gained admission to twelve psychiatric hospitals by complaining that they were hearing voices. (1) They were diagnosed as either schizophrenic or manic-depressive. Immediately after entering the hospitals, the counterfeit patients ceased complaining of voices, returned to their normal behavior, and insisted that they were cured. Despite the change in their behavior, the average length of stay before discharge was nineteen days, with the longest stay being fifty-two days.

The inability of medical professionals to detect that the counterfeit patients were normal is an example of wrong perceptions made with innocent motives. The medical professionals viewed the counterfeit patients through skewed lenses. We also tend to view others from our own perspective. I evaluate and ascribe motives and emotions to others and judge them, based in part upon my own background, experiences, and cultural perspective. In other words, my socialization affects the way I look at others. This is known as social perception.

A problem arises since social perception occurs through a person's own background and perspective: ". . . in the broad sense social perception is always self-centered." (2) Thus how people actually are and how we see them can be significantly different. Indeed, a person's perceptions are incomplete, at times inaccurate, somewhat superficial, and partially established prior to the interaction. (3)

How does this relate to ministry? Unfortunately, this suggests that ministry is often the reflection of those doing the ministry and not those who receive the ministry. Thus, an outreach ministry to a particular group is unknowingly shaped and influenced by the people engaging in the ministry. If those doing the ministry and those receiving it are culturally close, then the ministry can flow with a minimum of obstructions. But if the two are culturally distant, then the ministry will not flow well, if at all, because it does not connect to those it is designed to reach. And since this occurs unknowingly to those doing the ministry, they will be at a loss to explain its failure since the shape of the ministry makes good sense to them. It is not an over-generalization to suggest that most churches in America are quite culturally distant from the world of AIDS. Thus any ministry to people suffering with AIDS or somehow related to them must first understand the world of AIDS in order to build a ministry bridge to it.

Concerns of People Within the AIDS Subculture

Consider the following story, which is accurate in its details except for personal names. Bob and Mary were referred to me by a local pastor because of my experience with people who are HIV+. Bob and Mary are newly married and they have an infant daughter. Bob, who is in his early twenties, is HIV+; Mary is not. Three churches, upon learning of Bob's diagnosis, urged him to seek a church elsewhere. Bob works at a low-paying job; Mary does not work outside their home. Their income is meager and, although they are a nice couple, they have few friends.

What kind of ministry would attract Bob and Mary? What needs do they have that fall outside the ministry of the typical suburban church? How is their life different given the presence of HIV? What are their chief concerns? How does HIV affect or impact Bob and Mary's extended family? What emotions do they experience? In short, what is it like to be HIV+?

This article will examine questions like these using sociological research and actual stories of people connected to HIV. A ministry strategizing to connect with people who are HIV+ must consider the following areas of concern: relationship concerns, theological concerns, emotional/grief concerns, and financial concerns.

Relationship Concerns
A person who is connected to the HIV+ world faces a possible double loss in his or her relationships: the loss of friends via death from AIDS and the loss of relationships via rejection due to an HIV+ status. "The gay community has been cited as the group at highest risk for contracting the disease . . . and that community also becomes the core support system for those who deal with multiple loss, which can involve the destruction of entire friendship networks." (4) "Indeed, it is not unusual for a member of the gay community to have "buried 10, 20, and as many as 50 friends with AIDS." (5) Billar and Rice describe a man named Franco who had buried fifteen friends as a result of AIDS. "He (Franco) felt a chunk of him was always taken away when a death occurred, and he was not sure how many more chunks he had to give away. Sometimes he did not want to wake up in the morning and be left behind when all his friends had gone on, and yet he did." (6)

I recently interviewed two men about living with an HIV+ status. One of them is HIV+ and the other is an HIV+ caregiver. I asked them what happened to a person's family relationships once he or she tested HIV+. The caregiver responded that "85 percent push them (the HIV+ person) away, don't want anything to do with them. Only in the last couple of years have I seen families try to care." During the interview I asked the two men to suggest three specific ways a church could help someone who is HIV+. Interestingly, all three suggestions were related to relationship concerns: "accept them, (pause) participate in a person's home life, such as visitation, especially if they can't come to church, and be aware of times when they can't do for themselves."

Relationship concerns can be heightened for those who are HIV+ and nongay. For instance, nongay people who are HIV+ have less access to valuable information. "Nongay PWAs (people with AIDS) (especially women) also experience more difficulty in predicting their futures because so many studies have examined only how AIDS affects the health of gay men. Moreover, they are less likely to have networks of fellow sufferers to whom they can turn for advice and information." (7)

Compounding the relationship concerns of HIV+ people are the potential relationship problems for their families or significant others. "Despite the abundance of attention given to acquired immune deficiency syndrome (AIDS), little has been focused on the problems facing families and significant others. The problems include the overwhelming fear most family members have in sharing the news of an AIDS diagnosis, the first-time exposure of a family member's homosexuality, intravenous (IV) drug use, or both, and the caregiver's anger and fatigue." (8)

Kelly and Sykes also found that the family members and significant others who participated in the support group ". . . were reluctant to tell anyone that a family member had AIDS . . . They feared that if coworkers or, especially, parents were to find out that their family member had AIDS, their jobs might be in jeopardy. The greatest fear, however, was that people would not understand and would isolate them." (9)

I participated in a weekend retreat in May, 1991 for hemophiliac/HIV+ people, their families, and the medical professionals who work with them in Ohio. During one of the workshops a mother shared her fear that her twin boys could eventually test HIV+ (by receiving tainted blood) and be shunned by others. This mother related an incident when a person repeatedly asked her in a public gathering if her boys had tested positive. The mother indicated that the questions were negative in tone and accusatory. The relationship concerns of people within the subculture of AIDS can be met through the ministry of the local church. A church can fill this relational vacuum but it must make the first move.

Theological Concerns
At the present time, if a person tests positive with HIV, that person will eventually die from complications related to a compromised immune system. As a result, the presence of HIV compels a person to examine issues that are theological in nature. Research indicates that people who are HIV+ seek answers about death and dying, emotional guilt, and the random nature of evil in the world. "Uncertainty exists whenever people lack a cognitive framework for understanding their situations and thus feel that they cannot predict the outcomes of their behaviors." (10)

A church is able to provide a theological cognitive framework for people with AIDS. Research into support groups for people with AIDS indicates that ". . . a central theme found in the subtext of the seemingly mundane, concrete subjects addressed in support groups for people with AIDS relates to existential questions of separation, loss, and death . . . Given the highly charged emotional and intellectual questions that arise when discussing life and death, group workers need theoretical and conceptual guidelines." (11)

In volunteering with the Community Free Job List and Crisis Center, an urban ministry to people with AIDS in Columbus, Ohio, I have observed that HIV+ people who are not homosexual approach theological issues differently than those who are. It appears that non-homosexual HIV+ people are more likely to be open about spiritual issues. Homosexuals, on the other hand, seem to be more guarded when talking about church, God, the Bible, and spiritual things. Part of the reason for this may be that I am a pastor and many homosexuals have had bitter rejection from pastors and churches. Homosexuals learn early on that "the church" condemns homosexuality. They look with suspicion upon those who represent the church of God.

Although my experience with the Community Free Job List is limited, it is worth noting. My interactions with a homosexual man and a non-homosexual woman in the weeks before their death from AIDS are examples of my experience. The man was quite resistant to discussing spiritual issues. In fact, when I asked for permission to read him the Bible he responded, "No. Whenever people read the Bible they mess with my mind and I don't want to be mixed up any more." I asked him, if he were looking for a church to attend, what kind of church would he select? I added, "As a pastor I'm always interested in what people think about church. I want to know as a pastor how to better minister to people." The next time I met with him he asked me to read the Bible to him. To my knowledge he never made a commitment of his life to Christ.

The non-homosexual woman was quite different in her feelings about spiritual issues. Jesus Christ was precious to her. She was very eager to talk about God and Jesus Christ. Every time I saw her, a Bible was always with her. When she died, she went to be with her Lord in heaven.

The point to these examples is not that homosexuals want nothing to do with God or spiritual issues. Rather, within the subculture of AIDS there is a resistance to "the church." A ministry to people with AIDS, especially homosexuals, must overcome this sub-cultural resistance to the church, especially the suburban church.

To do so effectively, the church must come to terms with the following questions: What does the Bible say about homosexuality? How does the Bible view sin, regardless of what the sin is? In what ways does the church ignore, passively support, or even promote certain sins while selectively condemning others? Why does the church treat some sins lightly and others harshly? Is the church willing to face its own biases about certain types of behavior? Does the church treat the appearance of sin in people's lives equally? How does compassion relate to sin? How did Jesus treat people who were in desperate need of help but who were also caught in the web of sin? Is the church willing to love anyone, or only certain types of people? What past record does the church have in welcoming people with socially undesirable traits? Can a church tolerate losing people in its quest to reach out to modern lepers? How will a church benefit by bringing HIV+ people into it? In what ways will a church be taken to higher levels of love and faith by reaching out and bringing in people with AIDS? (12) Only after a church has come to terms with such questions and built relational bridges to HIV+ people is it ready to approach theological issues.

The existential questions felt and voiced by a person close to death can only be correctly answered by the Word of God and the truth found in Jesus Christ. It has been my experience that there is no formula for discussing Jesus Christ with HIV+ people. Once a relationship is established, there will be natural opportunities for discussing HIV, death, fear, guilt, and eternal life and how they relate to Jesus.

Emotional/Grief Concerns
HIV+ people and their families and significant others face a wide range of emotions. Among them are fear, anger, uncertainty, sorrow, and guilt. Fear is associated with not knowing when AIDS will develop, how long he or she will live, social rejection, job loss, financial ruin, church isolation, and the availability of medicine, medical care, and a caregiver.

Anger is associated with the gradual loss of control that emerges in the life of an HIV+ person. Several years ago I attended clergy training provided by the Columbus AIDS Task Force. Orin Newberry, hospital chaplain for Riverside Hospital in Columbus, directed a session entitled "Loss." During this lecture he asked the attending pastors to list their four most prized possessions, important goals, sources of self-esteem, and relationships. Then the chaplain walked us through the ordeal of losing those items because of a debilitating disease. He first asked us to remove two items (of our choosing) as a result of the disease. Then he asked us to remove two more items as the disease progressed. This went on until we were told to remove the last two items as death neared. After the experience I noticed that it was very difficult to make such choices. I also noticed that possessions were the first category to be completely removed while relationships was the last category removed. Finally, I noticed how little control I had, as I did not want to remove anything from my life but was forced to anyway. (13)

HIV+ people face uncertainty because they have no way of predicting when AIDS will develop. Certain drugs may slow the progress of the disease for a time in some people. Yet not everyone has access to these drugs and they are not 100 percent effective. Eventually, the disease takes over. I knew a person with AIDS who went from being the director of an AIDS group home to being totally ravaged by AIDS in five months. Sorrow and grief are experienced as HIV+ people lose other friends or loved ones to AIDS. Their families experience similar grief and loss. (14)

Financial Concerns
Personal finances are a significant problem for HIV+ people for a number of reasons. First, the demographics of AIDS are such that the disease strikes many before they reach their peak earnings years. As of June 1995, 64 percent (304,126) of all cases of AIDS affect people between the ages of 20 and 39. In addition, 52 percent (247,524) of AIDS cases strike minorities (34% African-American, 17% Hispanic, 0.7% Asian-Pacific Islander, 0.25% American Indian/Alaskan Native). Further, 35 percent (166,836) of AIDS cases are connected to IV drug usage, which in turn is correlated with poverty. (15) In Addition, HIV+ women tend to face more financial stress than HIV+ men. (16)

Second, finances are a significant problem for HIV+ people because the debilitating nature of the disease eventually erodes a person's ability to hold a job. As the disease progresses, it is not unusual for a person to be hospitalized once a month. At the Community Free job List and Crisis Center, every person with AIDS receives Social Security disability income because they are unable to maintain steady employment. According to the Columbus AIDS Task Force, the maximum a person can receive for Social Security disability income is $600 per month.

Third, treatment is very expensive. For instance, I interviewed an HIV+ man who explained that his drug prescription costs $2 per pill and $200 per bottle. Once a person with AIDS loses a job (and his or her health benefits), there is a transition period after regular income stops and before Social Security disability income begins. During that period, a person can incur serious expenses related to the illness.

Fourth, many HIV+ people have been severed from family ties and do not benefit from financial help as would a cancer patient in similar circumstances.

Fifth, Social Security disability income is not adequate to provide desirable housing. Thus, the HIV+ person with no other income apart from Social Security must live where rents are low, which typically are in blighted areas. I have ministered to people in the final stages of AIDS whose financial resources were meager and who, as a result, were forced into deplorable housing. AIDS literally stripped them of any semblance of dignity.

How Can a Church Respond?
Our church is currently over two years into a transition to become a cell church. A cell church views ministry as flowing primarily out of individual (home-based) cells as opposed to programs that are typical of an American suburban church. As a result, we are dismantling programs in order to allow our cells to do ministry. The defining feature of our cells is the experience of the presence of Christ in the cell as the cell functions as the body of Christ (1 Corinthians 12:27).

The cell is uniquely designed to bring a person into contact with the living Christ. Consider the four areas of concern to a person within the subculture of AIDS outlined in this article - relationship concerns, theological concerns, emotional/grief concerns, and financial concerns. The cell, functioning as the body of Christ, connects the living Christ with each of these concerns.

Relationship concerns are met as people within a cell experience mutual love, care, encouragement, compassion, acceptance, and grace rooted in Jesus Christ. During a recent visit to one of our cell groups, I heard a woman express her love and gratitude to her group for standing with her when she learned she had inoperable cancer. At another meeting, the cell group gathered around a man, laid hands on him, and prayed for his recurring bouts with depression. At still another cell, a woman admitted to crack and alcohol addiction that necessitated time at a recovery clinic. Her cell continues to pray for her every week even though she had been to only one meeting. The cell bonds people to each other in Christ.

Theological concerns and questions are addressed within the cell in a manner that goes beyond safe discussions and advice giving. To be sure, questions are raised within our cells. But questions are discussed and the Scriptures are studied not as ends in themselves but as means to a greater end - to know the living Christ as he is experienced within his body. What better place could there be for a person with AIDS to wrestle with questions about suffering, death and dying, fear, eternity, heaven, the cross, forgiveness, and redemption?

Many of the emotional and grief concerns of people within the subculture of AIDS are met within the cell. These concerns include love and acceptance, shame issues, courage to live, prayer, hope, a sense of God's power, forgiveness, accountability, and help from others who have faced similar problems. These all occur naturally in healthy cells.

Finally, financial concerns and fears are likewise addressed within the cell as the cell members instinctively rush to the side of a brother or sister who needs help. Help is given and received in the name of Christ.

Five years ago I met Roy, who was living with AIDS. He was 42 years old with a history of crime and drug addiction. On March 1, 1991, Roy was a patient at the Ohio State University Hospital suffering from pneumocystis carinii pneumonia. That day he surrendered his life to Jesus Christ. Roy later attended church with me but he never felt at home there. At that time we had no cells and Roy did not fit into our traditional church structure: he was illiterate (that canceled Sunday school), he had no musical abilities (so much for choir), AIDS left him too weak to assist with our building (that eliminated trustee work), and he was not able to participate in our sports program (golf or softball). Our morning worship services were too large to allow Roy to build significant relationships and transportation problems made our evening service impractical. There was no place for Roy in our traditional way of doing church.

He soon drifted away from church because there was no glue to bond him to our fellowship. He eventually succumbed to his crack addiction, which accelerated his AIDS. His final weeks were spent living at an urban mission. I would visit him at the mission to encourage him in the Lord even though I knew my words were mostly empty to him. I grieved for Roy because a church did not know how to connect him with the living Christ. And I grieved for myself because I knew the church had failed but I did not know how to correct it. Now I know. But Roy had to die on the streets.

Chip Heim, D.Min., serves as pastor of East Side Grace Brethren Church in suburban Columbus, Ohio

From Urban Mission, published by Westminster Theological Seminary, Philadelphia, March 1999. Used by permission.

Endnotes

1. The eight people were three psychologists, a pediatrician, psychiatrist, painter, a graduate student, and a woman who worked in her home. Five were men; three were women. These individuals were deemed "sane" beforehand and exhibited no behaviors that would suggest that they could be candidates for actual admission to the hospitals. See D.L. Rosenhan, "On Being Sane in Insane Places," Science, 179 (January 1973): 251.

2. George J. McCalL and J.L. Simmons, Identities and Interactions (New York: The Free Press, 1978), p. 101. See also Lee D. Ross, Teresa M. Amabile and Julie L. Steinnetz, "Social Roles, Social Control, and Biases in Social-Perception Processes," Journal of Personality and Social Psychology, 35:7 (1977): 485-494.

3. Ibid.: 101-102, Note their literature review on pp. xxiii-xxiv and pp. 102-120.

4. Ray Billar and Susan Rice, "Experiencing Multiple Loss of Persons with AIDS: Grief and Bereavement Issues," Health and Social Work, 15:4 (November 1990): 283.

5. Ibid.: 285.

6. Ibid.: 287. See also William Dean Nicholson and Bonita C. Long, "Self-Esteem, Social Support, Internalized Homophobia, and Coping Strategies of HIV+ Gay Men," Journal of Counseling and Clinical Psychology, 58:6 (December 1990): 873.

7. Rose Weitz, "Uncertainty and the Lives of Persons with AIDS," Journal of Health and Social Behavior, 30:3 (September 1989): 278.

8. James Kelly and Pamela Sykes, "Helping the Helpers: A Support Group for Family Members of Persons with AIDS," Social Work, 34:3 (May 1989): 239. This study focused on the people who participated in a support group for the family members or significant others of people who are HIV+. The group over a four-year period included 40 such people.

9. Ibid.: 239-240. There is some research which suggests that negative and judgmental attitudes regarding homosexuality are connected to social rejection of HIV+ people. One study " . . . found that those who held negative attitudes toward homosexuality tended to view AIDS as 'immoral,' 'disgusting,' 'dirty,' and 'God's punishment for homosexuals.' Moreover, . . . the rejection of non-homosexual adults and even children with AIDS was strongly related to negative attitudes toward homosexuality. Thus, rejecting a person with AIDS may be a symbolic expression of one's general attitudes and values regarding homosexuality." See John M. Pryor, Glenn D. Reeder, and Julie A. McManus, "Fear and Loathing in the Workplace: Reactions to AIDS-Infected Co-Workers," Personality and Social Psychology Bulletin, 17:2 (April 1991): 134. The research of Pryor, Reeder and McManus assumed that if a person had a negative view of homosexuality then that person will tend toward social rejection of HIV+ people. This assumption (while true in some instances) is certainly not true of all people who have a negative opinion of homosexuality. Unfortunately, the research creates a powerful impression and the impression becomes accepted fact.

10. Weitz, "Uncertainty and the Lives of Persons with AIDS," Journal of Healtb and Social Behavior, 270.

11. George S. Getzel, "Survival Modes for People with AIDS in Groups," Social Work, 36:1 (January 1991): 8.

12. "If we are willing, people with AIDS will teach the church how to be a community of faith that is pleasing to God - a community that seeks justice (right loving) and champions the oppressed; one that cares for the poor, the widowed and the orphan (Isa. 1)." See L. Annette Jones, "AIDS: A Mission Opportunity for the Church," International Review of Mission, 78:3 (April 1989): 208.

13. In one study a man offered the following testimony: "AIDS has become my life. I live for AIDS. I don't live for me anymore, I live for AIDS. I'm at its beck and call and I'll do what it tells me, when it tells me." Weitz, "Uncertainty and the Lives of Persons with AIDS," Journal of Health and Social Behavior, 275.

14. For a full discussion of the fear, anger, uncertainty, sorrow, and guilt faced by HIV+ people see Weitz: 272-277 and Kelly and Sykes, "Helping the Helper: A Support Group for Family Members of Persons with AIDS," Social Work: 240-242.

15. See U.S. Centers for Disease Control, HIV/AIDS Surveillance Report. (U.S. Department of Health and Human Services, June 1995): Tables 3 and 8.

16. See Denise Stuntznew-Gibson, "Women and HIV Disease: An Emerging Social Crisis," Social Work, 36:1 (January 1991): 22.

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The Sub-Culture Of AIDS

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