Kimberly Vrudny

Religious Fundamentalism

In HIV/AIDS, Public Health, Religious Fundamentalism, Shame, South Africa, Stigma, Structural Drivers of the Pandemic on August 11, 2010 at 1:30 am

Deconstructing the Architecture of Shame

South African journalist Jonny Steinberg has been acclaimed for his book Sizwe’s Test: A Young Man’s Journey Through Africa’s AIDS Epidemic, not least of which for insights he provides into the “architecture of shame” that frequently accompanies an HIV/AIDS infection. In order to understand the limits of efforts to make ARVs accessible widely in the country of Steinberg’s birth, over a period of eighteen months Steinberg accompanied Sizwe, a young adult man in his twenties who lives in the Eastern Cape Province of South Africa. Steinberg is curious about why so many South Africans, like Sizwe, refuse to be tested for HIV. In the process of writing the book, Steinberg discloses how the pandemic brought into sharper relief in his own mind a parallel that existed between his privileged white South African upbringing and Sizwe’s own marginalized upbringing within a rural village in the same country. Both men faced the culture’s stigma in relation to HIV/AIDS. After considering the ramifications a positive diagnosis would have on Sizwe’s livelihood even beyond the infection, and after listening to Sizwe’s rationales for so opting, Steinberg dug deeper into his own experience for a framework in which to make sense of Sizwe’s decision. By sharing indiscretions of receptionists and of medical personnel who failed to protect Steinberg’s privacy and who then passed him off to another clinic under the guise of concern, Steinberg constructed in his book what he calls the “architecture of shame,” and the scrutiny under which those who agree to be tested live, regardless of the outcome of the test. Shame is internally present, stigma its external driver. Knowledge of shame is what he shared with Sizwe, along with its accompanying and requisite fear of social ostracization.

At [shame’s] root lie myriad watching, judging eyes that look at one and see a disgusting and gluttonous figure. They are the eyes of others, but one has internalized them. They are strangers’ eyes whose watchfulness is nonetheless experienced in secret on the inside. When one stands in a crowded room and a person shouts ‘HIV,’ the very name and embodiment of one’s shame, the secret opprobrium expressed by the strangers inside heads for the real strangers on the outside like electrons in a force field. You are suddenly struck with the sickening feeling that the contemptuous eyes have always been on the outside; that is their natural home (Steinberg, 293).

In a conversation with Edwin Cameron, a judge in South Africa’s Supreme Court of Appeal, among the first public officials to disclose his status and to advocate for nation-wide accessibility of pharmaceutical treatment, Steinberg records the judge’s reflections in relation to self-contempt and, as such, to shame. “‘I knew my status for eleven years before I started treatment,’ [Cameron] said. ‘During that time, I did not realize that this virus inside me represented an enormous contamination, a sense of self-rejection. I only began to understand these things when I realized that the drugs were working. Once the viral activity had been stopped in my body, I stopped feeling contaminated. . . . There’s a liberation from a sense of self-disentitlement which successful treatment brings’” (Steinberg, 181-182). The tragedy of this statement is that, by shadowing Sizwe for all of those months, Steinberg was studying the limits of the reach of ARVs on a population that, for many reasons, continues to resist white “men” and their needles.

Steinberg and Cameron’s reflections provide three-dimensionality to the concept of stigma, shame’s more public companion. Ervin Goffman, a Canadian sociologist, defined stigma as the process by which the reaction of others spoils normal identity (Erving Goffman, Stigma: Notes on the Management of Spoiled Identity [Prentice-Hall, 1963]). By definition, stigma is “a mark of disgrace associated with a particular circumstance, quality, or person.” Scholars differentiate individual stigma from social stigma, the latter of which is “severe disapproval of personal characteristics or beliefs that are perceived to be against cultural norms.” According to AVERT.com, “AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS. [This] can result in being shunned by family, peers and the wider community; poor treatment in healthcare and education settings; an erosion of rights; psychological damage; and can negatively affect the success of testing and treatment.” (See the article in full for an excellent overview of the stigma associated with an HIV/AIDS infection athttp://www.avert.org/aidsstigma.htm.)

Although different contexts will express the phenomenon differently, stigma has trailed the virus everywhere it has spread. The nuances in which it is expressed in a culture like ours in Minnesota, at a Catholic University where I teach courses in Christian doctrine, are instructive, for these stigmatizing forces are prevalent even in a climate where it is most uncomely to speak of them. They come to the surface, however, when I require students to participate in service projects related to HIV and AIDS. In doctrine classes, for example, students are required to work several shifts at Open Arms of Minnesota, an organization in the Twin Cities that prepares meals for and delivers meals to people living with HIV/AIDS, ALS, MS, and breast cancer. For some of my students, perhaps a quarter, the reluctance to engage is both rigid and immediate. Even once orientation to the project is complete, when fears about contracting the virus by paper cuts or whatever other ridiculous stories they’ve heard are dispelled, many of my students would prefer to engage in projects for other, it is revealed in class, more “worthy” recipients.

When we discuss this reaction, I ask, “In your mind, what makes people living with HIV/AIDS unworthy of the kind of care and concern we could offer by, say, delivering a meal through the work of Open Arms of Minnesota?” For these students, it always comes down to a judgment about very private behaviors they consider sinful—and which this virus makes public. These perceptions are the very root of the shame and stigma associated with HIV/AIDS and, as such, it is vitally important to investigate them, in order to overcome them. And so something like the following conversation ensues every semester. It is a compilation of numerous exchanges with students across years of teaching and, while the majority of students do not express verbally the attitude of the student depicted below, one cannot help but to sense that those who do speak up represent a fair number of students whose desire to be politically correct prevents them from uttering aloud similar thoughts.

“So,” I begin, “let me see if I am understanding this correctly. Firstly, you are making assumptions that the people to whom you are serving meals are HIV-positive when Open Arms delivers meals also to people who are living with breast cancer, ALS, and MS. Secondly, you are making assumptions about how the people acquired the virus, but regardless it automatically falls into the category of ‘sin.’ Thirdly, you are imposing your own religious views onto the person even though you don’t know if they share your view as their own and, moreover, you are making assumptions that the supposed sin has not been absolved. And, lastly, you are judging that person therefore to be unworthy of your own very valuable service hours. Am I tracking this correctly?”

“Well, basically—yes.”

“And if the people to whom we deliver meals have indeed committed an act that the church considers to be sinful—let’s say they’ve had intercourse outside of marriage—what if they have confessed their sins to a priest and have received absolution?” I go on: “They have received God’s forgiveness, but not yours? Does the recipient of care need to ask for your forgiveness, as well? And what about the person that delivers on Thursday? Shall they seek that care provider’s forgiveness, too? Do you expect them to confess to everyone who comes to the door?”

“I guess not. I never thought about it from their perspective before.”

“My suspicion, though, is that the mere idea of having sexual intercourse outside of marriage doesn’t offend you nearly as much when a sexually transmitted disease isn’t part of the equation.”

“I’m not sure what you mean.”

“The rumor in the quad is that lots of your classmates go to parties on the weekends. More than just a few are probably not going to their bedrooms alone afterwards. Do you shun them in the cafeteria?”

“I’m not the partying type, myself. I don’t shun them. I just hang out with a different crowd.”

“Fair enough.” Stopping for a minute to think about how to redirect the line of argument without losing the point, I say, “But what if one of your classmates were to get sick?”

“What are you asking?”

“If your dorm organized a food service, would you deliver him or her a meal?”

“Sure. Why not?”

“That’s all I’m asking you to do for the clients of Open Arms.”

“That was tricky,” my student says, defensively. “But my classmates aren’t like the people that Open Arms serves.”

“Now you’ve lost me,” I reply. “What do you mean they aren’t like the people that Open Arms serves?”

“C’mon Dr. Vrudny. You know what I mean.”

“I’m afraid I really don’t.”

“Most people who have AIDS in Minnesota are gay.”

“That is statistically true. What is your point?”

“That is my point.”

“Should we not deliver meals to people who are gay?”

My student was silent.

“Because that is what we’re doing. We’re contributing to the vision of Open Arms. They believe that no one who is sick ought to go hungry. Kevin Winge, the executive director of Open Arms always says: ‘It’s about food.’”

My student says nothing.

“Let me ask you this: Did you know that in Minnesota, epidemiologists are watching with great concern the numbers of people in between the ages of 16 and 24 who are becoming infected, because there is a disproportionately high number of new infections in young people, both homosexual and heterosexual?”

“I heard that during the orientation, but I’d forgotten.”

“And did you know that worldwide more than half of people living with HIV/AIDS are women?”

“No. I thought they were mostly gay men.”

“And do you know that many infants and children are living with HIV today, as a result of something they call ‘vertical transmission,’ or mother-to-child transmission?”

“Yes, I know about that. But I thought that was a small number.”

“Worldwide, more than 2 million children are living with HIV/AIDS today. That’s not exactly a small number.”

“Right. It isn’t.”

“There are also about 140 million orphans today, largely due to HIV/AIDS.”

“I can’t even get my head around that number.”

“I know. It is a particularly staggering statistic. That one keeps me up at night.”

“Hmmm,” my student acknowledges, nodding slowly.

“Do you know that many wives who have been loyal to their husbands are infected by the double standards in many cultures that tolerate married men having more than one sexual partner, but not married women?”

My student nods.

“And in places more numerous than I care to number, many people are poor and hungry. They are desperate for money. Women and children are often sold by families, often unaware, into human trafficking rings, or many women sell their bodies for money.”

“That can’t be too many.”

“I wish you were right. But I’m afraid you’re really in error . . . .” My mind trails off to memories of visiting a group of young children in a township in South Africa. The oldest was probably eleven. They told me they wanted to be engineers and doctors when they grew up. Then we drove up the road maybe a half-mile, and got out of the car to talk with a group of young women who were playing net ball. They were all sixteen to eighteen years of age. We asked them how HIV was affecting their community. They told us that they were playing net ball to build skills in sports. They thought maybe if they could make it athletically, they wouldn’t have to sell their bodies in order to survive. I emerge from the township again when I hear my student assert, “Still, if people would be responsible for themselves, infection rates would go down.”

“Yes, yes,” I say, holding my forehead for a minute. “And certainly no one is suggesting that we cease efforts to get information out there about how dangerous it is to have more than one sexual partner. But may I ask you a question?”

“I suppose.”

“Have you ever thought about what your responsibility is in relation to the pandemic? I mean, you’re talking a lot about responsibility. But the responsibility about which you speak seems to be ‘theirs.’ So I’m asking: what is yours?”

“What do you mean? I’m only twenty. I’ve not been infected, and I won’t infect anyone else. I’m a very responsible person.”

“Right, right,” I say, gathering my thoughts. “But I didn’t mean only your responsibility in sexual encounters. What I mean is: what is our collective responsibility as human beings toward people who have been impacted by this public health crisis of the modern day?”

“It isn’t my fault that so many people are getting sick.”

“I’m not suggesting it is your fault. Rather, I’m asking: what is our responsibility in the face of this illness?”

“I didn’t think I had any responsibility at all in relation to a pandemic impacting people half way around the world.”

“As well as here,” I quickly interject. Thinking it is time to share some of my own thinking about responsibility, I say, “I see the world as greatly interconnected. One country’s economy affects another’s. Some are winners in that contest. But the costs are high for the losers.”

“So? What’s your point?”

“So, as a human being, and as a Christian human being, I want to contribute to the creation of a world where the interconnectedness of humanity is honored, where we recognize that if one person goes hungry, we all are deprived.”

“I don’t get it. I’m rarely hungry.”

“How does that make you feel—that you rarely go hungry in a world filled with hunger?”

“Happy that I live here and not there. Grateful for my life. Blessed, even.”

Ignoring the projection of hunger to “over there,” when I know that there is too much hunger here, as well, I say, “‘Blessed’ is a theological word.”

“Yes. I am a Christian.”

“I see.”

“Catholic even.”

“Lovely. . . . So, when you say you are ‘blessed,’ does that mean that God does not bless, say, those who go hungry? So hungry that they are desperate for money? So desperate for money that they sell their body for money in order to buy food and contract HIV as a result? Are they forsaken by God, whereas you are blessed?”

“I never thought about it that way before.”

“I know. I know. It’s okay. I’m just trying to get us to think about all of this in relation to God. It is a theology class, after all.”

“Very clever.”

Pressing on, I say, “So what do you think God wants of us in this situation? To just shrug our shoulders, and to say: ‘too bad.’”

“I suppose not,” my student said, quietly. But I could see there was more. When pressed, my student relents in a whisper, “But my priest has said AIDS is a punishment from God.”

“Do you agree with him?”

“I’m not sure. I try not to think about it.”

“The idea that AIDS is a punishment from God is a fairly easy one to dismiss, you know,” I offer.

“Really?”

“Yes, really. We are taught to think of God as a Father, right?”

“Right.”

“Well, if your earthly Father intentionally exposed you to a virus in order to punish you for whatever you’d done wrong and it killed you, he would be tried for murder.”

“I follow you.”

“So, we arrest a human Father for murder for this kind of behavior, but we worship and praise God for the same behavior on a massive scale?”

“But he’s God.”

“Yes?”

“Nevermind.”

After stopping for a moment to let the previous analogy soak in, I continue. “The other side of the argument that often comes is that God sends HIV/AIDS in order to test us—to see if we’ll respond compassionately.”

“I’ve heard that, too.”

“Again, to use a parenting analogy: Let’s say that I have two kids. And let’s say that I shoot the first one to see if the second one will respond compassionately.”

“I see where you’re heading. You’re going to be carted off to jail, again.”

“Exactly.”

“I understand. But I still don’t know why God sends HIV/AIDS.”

“Are we sure that God sends HIV/AIDS into the world? Maybe it is just a natural thing—like a fungus that kills a beautiful tree, only this virus happens to kill humans?”

I was happy that my student was still hanging in there, and still listening. But it was time to bring it around to my main point, so I say, “Let me ask you something your generation seems to be asking yourselves quite often these days: What would Jesus do?”

“How am I supposed to know?”

“Fair enough. But what do you know about him?”

“He died on the cross to save us from our sins.”

“That’s a good start, and we’ll definitely be talking about all of that in due course. But I mean—what do you know about how he spent his time? What do you know about what he taught?”

“He called twelve disciples. And he went from place to place healing people. He taught people about how to inherit eternal life. And then he was crucified.”

“I see. And what did he say—I mean, when he taught about how to inherit eternal life? How do you inherit eternal life?”

“I dunno. I can’t remember.”

This time, I was silent.

Finally, my student answers, “You believe in him, maybe?”

“He talks about this rather directly. According to the Gospel of Matthew, in a rather forthright account providing a string of information about the kingdom of God, he talks about those who inherit eternal life. May I read it to you?”

“Is that a rhetorical question?”

Picking up my Bible, I read from the 25th chapter of Matthew, beginning with verse 34: “Then the king will say to those at his right hand, ‘Come, you that are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.’ Then the righteous will answer him, ‘Lord, when was it that we saw you hungry and gave you food, or thirsty and gave you something to drink? And when was it that we saw you a stranger and welcomed you, or naked and gave you clothing? And when was it that we saw you sick or in prison and visited you?’ And the king will answer them, ‘Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.’ He goes on to say that those who serve people in this way are welcomed into eternal life.”

“Are you trying to frighten me?”

“No, not at all. We are going to spend a great deal of time in class talking about the grace that makes it possible for us to feed the hungry, give drink to those who thirst, welcome the stranger, provide clothing to the poor, and care for the sick. In time, knowledge of grace should eliminate your fear. For now, I’m trying to get us to look at what God might expect of us according to a Christian understanding. . . . Does it make you think that maybe we have a responsibility in relation to the pandemic?”

“I’m beginning to understand what you’re saying.”

I smile. “May I say just one more thing about this?”

“If you must.”

“In my reading of Bible, Jesus doesn’t seem to think that anyone is unworthy of his time or attention. He reached out to all of the people who were excluded in his culture. All of the ‘untouchables’? He touched them. Lepers, menstruating women, Samaritans. He touched them all—even on the Sabbath, apparently. He befriended tax collectors and prostitutes, alike. The widows and orphans who had no one to care for them—he cared for them. So, if we were to take the question, ‘What would Jesus do?’ seriously, how might we respond?”

“I guess we should try to figure out who the untouchables are in our culture, and try to do likewise?”

“That is a really beautiful idea. Who are the untouchables in our culture? Who are the ones cast aside by our social systems?”

“Well, let me think for a minute. The homeless, maybe? Prostitutes, still? There are immigrants in my hometown. I’ve heard some pretty unkind things said about them. So they seem to be cast aside. And the uninsured, too.”

“That’s a great start. Anyone else?”

“Yes. I know where you are heading. You are wanting me to say: People living with HIV/AIDS. I suppose they’re like the lepers of Jesus’ day.”

“It’s been said.” Not exactly comfortable with the analogy given the cruelty of humans to those they perceive to be different, nevertheless I press on. “So. What am I saying? What is our responsibility in relation to the pandemic?”

“You’re saying that if I care for someone who has HIV/AIDS, I’m caring for Christ. And it is what God desires for me to do in this situation.”

“And what do you think about that?”

“It’s hard.”

“Is it? Lots of my students, by the end, talk about how ridiculously simple it was—to give an hour or two a week to pick up a cooler packed with food, and to get it to people who are not feeling well, but who need nutritious food to feel better.”

“Really?”

“Yes. Really. And you know what I hope?”

“What?”

“I hope that, one day, you might look back and think how meaningful it was—this experience, doing something that seemed so off-putting at first, doing something as simple as handing a person a bag of food across a threshold. Someday, perhaps years from now, you’ll hear something said about someone who is gay, or someone who has contracted HIV/AIDS, and maybe you’ll stomach will turn a little bit because you don’t like to hear such derogatory talk. I hope that this simple kindness you are offering this semester ignites a love in you that becomes your source of greatest joy.”

“That might be aiming kind of high.”

“I tend to do that.”

“I don’t get it,” my student persists.

“For now, that’s okay. You don’t need to get it. I just wanted us to have a straightforward conversation to get to the root of what troubled you about the assignment and in order to discuss what, in my mind, HIV/AIDS has to do with theology.”

“Quite a lot, as it turns out.”

“Yes,” I nodded, smiling. “Quite a lot. And we’ve only scratched the surface.”

Sighing, my student looks into the distance.

“Listen,” I say, pausing. “Give it a chance. Deliver a shift of meals at Open Arms of Minnesota, and we’ll talk again. And I promise: all of this will make more sense as we study theology this semester.”

“Do I have any choice?”

“Yes, of course you do. You can drop the course. There are lots of other sections in which you can enroll, even yet this semester.”

Thinking for another few seconds, I hear, “Okay. I’ll give it a shot.”

“Lovely! In the end, you may not agree with me. And that’s okay, too. But who knows?,” I suggest gently. “Maybe you’ll discover the face of God along the way.”

+  –  +  –  +  –  +

This imaginary yet all too realistic dialogue with a student demonstrates how deeply entrenched attitudes are about HIV/AIDS in our culture in Minnesota, if not nationwide, even still. Teenagers coming to college are under the impression that AIDS is only present among gay men and, given its presence in a population that engages in sexual activity the students consider to be offensive to God, they legitimize an unresponsive posture. Their immediate condemnation and judgment in relation to it all is the root cause of the shame and stigma that heap insult upon insult for someone living with the virus. There is something that we can do about these attitudes by analyzing them, addressing them, and working to eliminate them. In this case, we are able to do so within the context of a course in Christian theology, the very source of so much of the judgmental stance.

The service-learning project is intended to bring this kind of conversation into the open in the classroom, where we can reject ideas that marginalize, hoping ultimately to transform students’ lives into something more beautiful, even more Christ-like, by semester’s end. When we talk about human nature, which we call theological anthropology in systematic theology, students wrestle with prejudicial thoughts they may have had in relation to HIV/AIDS, thoughts that would otherwise remain unreflected upon if it were not for our engagement in the issue in the community through service learning. Students are forced to weigh that realization—that they themselves have had prejudicial thoughts—against their widely held belief in the essential goodness of humankind. And when we bring this recognition into conversation with the person and work of Jesus Christ, and contrast our own judgmental instincts with Christ’s wide embrace of humanity, we are able to talk about sin and redemption in a way that seems more relevant than it did before we engaged in service learning of this kind. And lastly, when we study the nature and mission of the Holy Spirit, we are able to get more deeply into the issue of altruism, and whether goodness is, indeed, naturally occurring or whether, just maybe, it is made possible by the gift of divine grace.

The issue of HIV/AIDS grounds our discussions in the real world and in the challenges that confront us, today, as a global community. The entire exercise points us to the vitally important issue of education in relation to HIV/AIDS—not only in terms of getting information into the public arena about what HIV/AIDS is and how it is transferred, and not only in terms of the ABCs of AIDS prevention, but also in terms of how we can shift the conversation about HIV/AIDS, especially within the churches, into a more constructive, even life affirming, pattern.

If our goal is the creation of a more just, a more forgiving, and a more beautiful global society, then this is our calling.

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