Stigma, Denial and HIV/AIDS, Lesotho to New York
Stigma, Denial and HIV/AIDS, Lesotho to New York
Student: Enid Farber
Mentor: Lucy Winner
Date: March 5th-7th, 2009

Plate 1
It has been a familiar and somewhat disconcerting pattern in my own life that often coincidences emerge and can be read as some kind of telltale sign at any given time. Just as I was about to embark on the readings and writing for this class, “Stigma, Denial and HIV/AIDS, Lesotho to New York”, I was suddenly a newly minted victim of a stigma that is just starting to take shape in New York City and beyond. So as I read the material, I found myself relating as a kind of kindred spirit, a clear departure from my years of relating as a friend of so many who have lost their lives to this epidemic as well as others who have been living with HIV for much longer than they ever expected. Furthermore, many years prior to my returning to school, I worked on an AIDS hotline, and became a voice of comfort for strangers as well as semi-educated on the disease. This was well prior to the current advances that have allowed many to live much longer.
The stigma that I refer to above is also related to an epidemic, one that creates havoc and instability and all kinds of life changing problems but is NOT an imminent health issue of life and death proportions. My own situation was bed bugs and it not only has caused much financial and emotional consternation but some ostracization that reminded me of what HIV positive friends had suffered in the early years of this health crisis. Fortunately in New York and its surroundings, most of that early ugliness has passed in the affluent communities. Education and public awareness of just how HIV is transmitted has helped alleviate much fear. But in many communities that is not the case.

Plate 2
Certainly that is the case and the norm in South Africa and perhaps in certain immigrant and poor neighborhoods and communities in New York City where enlightenment and access to facts is overshadowed by the preponderance of myths. Both authors Jonny Steinberg and Helen Epstein, compassionately, convincingly and authoritatively bring to light, the enormous societal challenges and burdens of countries and societies decimated by the most challenging health issue of modern history. Some would conjecture that cancer is more of a health problem and statistics would probably bear that out. But in the case of HIV/AIDS, the stigma and psychosexual complications that it inflicts upon those infected persons and those just navigating their sexual lives, is enormous and often too much to bear.

Plate 3
Epstein devotes Chapter 12 to the twisted way in which the United States, under the rule of George W. Bush ad his evangelical stranglehold, who incredulously has received much praise and self-adulation for his African AIDS policies, tried to once again impose its moral imperative by funding abstinence only programs. But she is convinced that a particular program, “Zero Grazing” might be the only sensible long-term attack that works because at its core, is a compassionate approach that understands this particular culture. The author also understands that “Zero Grazing” recognizes the undeniable power of human sexuality and its integral relationship to the culture that has been ravaged by the no win choice between sexual needs and desires and life and death.

Plate 4

Plate 5
Not only do mere mortals have to face this inescapable monster head on every waking hour, every breathing moment, whether HIV positive or negative, the fear of either contracting the virus or dying from the disease is never far from the frontal lobes of ones psyche. But beyond that fear and the reality is the absolutely paralyzing stigma that is always swirling around in their universe. The idea that sex, which is about birth and life, is also about an undignified sickness and death is overwhelming. In the case of Sizwe, he could not reconcile the need to be in control of his mortality, and his need to know that his life would be forever extended through his progeny, with his rational understanding that being tested would perhaps allow him to live longer through drug therapy if he was HIV positive. He struggled with the fear that if he found out he was positive he would lose control of his destiny and his resolve would be undermined. He clung to his patriarchal notion of passing on his lineage and that an AIDS diagnosis would disrupt his sense of security about his genetic immortality.

Plate 6

Plate 7
As I read the chapter entitled “Sizwe Magdla” towards the end of the book, where Steinberg finally discloses his own relationship to AIDS in Africa, (p. 289), I am struck by how long it takes for him to reveal himself. Without reading further, I wonder if there is some purposeful point to this chapter. Is this the psychological backdrop to his understanding Sizwe’s ongoing hesitation and fear of being tested and finding out the truth? A few pages later (p. 293), Steinberg admits what was to be the crux of his common alliance with Sizwe, as he describes the demons that seize him post testing. He turns the negative judgments of others inward, at least what he perceives to be those thoughts. He says to himself what so many hateful people have thought; he seems to accept that poison, battering his self-esteem. Then and there, the clarity of stigmatization is realized that he so eloquently expressed in the following words…
“And that is the sine qua non of shame. At its 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 ones 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”. (p. 293)

Plate 8

Plate 9
Denial is another powerful emotion, even in the case of the president of South Africa, Thabo Mbeki, as described by Epstein, on pp. 139-140. Is it no wonder that young people were in denial about the risks of unprotected, casual and multiple partners when the president made it his mission to deny the scientific findings of the AIDS epidemiology, as if to save face for his country and its rich cultural heritage and yet imperfect political history. I was struck by the inspirational, emotional and hopeful words that Mbeki recited during the signing of South Africa’s new constitution that Epstein shares on p. 118. I am reminded of my countries recent election of a politician who seems to share Mbeki’s same sense of social conviction with a poets sensibility and I worry that humanity will always find a way to digress as the forces of hate may be too great to rewrite a better history ultimately.
I was home working one day and had the television mindlessly running in the background. That day, February 19, 2009, Laurence Fishburne was on the daytime program, The View, commenting about, attorney Eric Holder’s haphazard words about racial relations in America. Holder said, “we are a nation of cowards when it comes to discussing race”. Fishburne’s much more diplomatic wording was, “maybe he should have said that we are afraid to deal with this issue because of the shame that is involved” (Fishburne). This comment grabbed my attention as I had been reading “Sizwe’s Test” for several days. The simplistic truth to that statement is a way to distill the very basic psychology of a disease that has battered the self-esteem of a whole continent and continues to challenge controlling the spread of the virus. Human frailty can be blamed. Even the good doctor Hermann was grappling with his own internal conflicts, of wanting to heal and save lives but sometimes succumbing to his own internal judgments.

Plate 10
The insistent pervasiveness of human nature has always been and always will be inescapable. But there is always hope as Epstein illustrates by profiling the Elizabeth Rapuleng’s of the world, a woman whose organization Sizanani Home Based-Caregivers provides refuge for AIDS orphans and Steinberg’s example of Kate Marrandi, a nurse without whom, many would have fallen by the wayside without anyone in the world to care for them. Because, I believe that sometimes it takes more than a village. But mostly it takes one person at a time, it takes one heart big enough, selfless enough, organized and smart enough, it takes courage against all odds, it takes an unshakable, unflappable, never-say-die hearty soul to perhaps save but one life. And it takes information, education and public awareness to tackle an epidemic, whether because of concurrency, promiscuity, or poverty, no matter the cause or origins.
Plate 11
Citations:
Epstein, Helen. The Invisible Cure: Why We Are Losing the Fight Against AIDS in Africa. First ed. New York: Picador, 2008.
Fishburne, Laurence. Interview. The View. ABC. New York, NY. 19 Feb. 2009.
Steinberg, Jonny. Sizwe’s Test: A Young Man’s Journey Through Africa’s AIDS Epidemic. New York: Simon & Schuster, 2008.
Photographic Credits and Captions:
Plate 1: “STDS, HIV, AIDS: Cures Found Here”, Victoria Street Market, Durban, S.A. Personal photograph by author. Apr. 2003.
Plate 2: “Moyotechture”-The Door, Moyo Restaurant at Melrose Arch, Johannesburg, S.A. Personal photograph by author. Apr. 2003.
Plate 3: “Prickautions”. Love Carefully, Aids Prevention Billboards carefully orchestrated in the South African Landscape, Outside Johannesburg, S.A. Personal photograph by author. Apr. 2003.
Plate 4: “South African’s Finest”, Sexy Couple, SAMA Music Awards, Sun City, S.A. Personal photograph by author. Apr. 2003.
Plate 5: “Two African Women and an African Bird”, SAMA Awards, Sun City, SA. Personal photograph by author. Apr. 2003.
Plate 6: “Smiling Medicine Man: Smiles Don’t Solve The Ills of All”, Victoria Street Market, Durban, SA. Personal photograph by author. Apr. 2003.
Plate 7: “Laughing Medicine Man”; He laughs at the attention but his life is all but amusing, Victoria Street Market, Durban, SA. Personal photograph by author. Apr. 2003
Plate 8: “African Boys in the Hood”; Checking out my erotica promo card at the free portion of the North Sea Jazz Festival, Green Market Square, Capetown, SA. Personal photograph by author. Mar. 2003.
Plate 9: “Beware”; Young Man Protecting His Turf in the Largest Township Outside Capetown, Cape Flats, Capetown, SA. Personal photograph by author. Mar. 2003.
Plate 10: “Bathroom Exhibitionist”; Happy, Playful Women, SAMA Music Awards, Sun City, SA. Personal photograph by author. Apr. 2003.
Plate 11: “Marketing Children”; 3 Children on display, Victoria Street Market, Durban, SA. Personal photograph by author. Apr. 2003.
