Stigma Kills

By Rachel Mash & Bungee Bynum

A young woman died recently in a South African hospital. Not long beforehand, her life had been one of great hope. Her employers had asked her to move across the country, leaving the region of Kwazulu-Natal (on the country's east coast) for a job in Cape Town. She did so, leaving her children behind. Soon afterwards, however, she became sick. Her employers forced her to take an HIV test. When they discovered she was HIV-positive, their supportive attitude changed.

After laying in the hospital for several weeks, with no one to visit her, she heard their voices outside the ward. “Finally they have come to visit me,” she thought. No, they had come to dump two cardboard boxes containing all her worldly goods outside the ward door.

She was hospitalized. After laying in the hospital for several weeks, with no one to visit her, she heard their voices outside the ward. “Finally they have come to visit me,” she thought. No, they had come to dump two cardboard boxes containing all her worldly goods outside the ward door. She died soon afterwards, friendless, penniless and homeless. Her last thought before she died was “What will become of my children?”

This is the human face of stigma. It is the face of pain of the seven year-old child who has no friends to play with because his neighbors have spread the word that he is HIV-positive (HIV+). “They throw stones at him like he was a mangy dog lurking on their street.” It is the face of the woman whose mother brings her own cup when she visits her, and the woman in the pew who moves around so as not to take the chalice after her. It is the pain in the eyes of the teenager thrown out of her house, with no place to go. “Get out of this house, you're not our daughter anymore,” her mother declared.

Stigma remains our biggest challenge in the fight against the HIV/AIDS virus. Science explains how the virus is spread, which ways it is spread, and how it is most likely to be spread, yet stigma cannot be boxed by science. Stigma continues to be a social phenomenon that in many ways remains more harmful than the HIV virus.

Stigma kills. It kills firstly because people are so afraid of testing positive that they do not go for tests, and thus they continue to pass the virus on. Thus they do not get the medication they need.

Stigma also kills because HIV is a virus that affects the immune system. Stress attacks the immune system too, as we all know when we are stressed, we are more likely to become sick. Some people discover their status and die within six months, yet others we know have lived with the virus for more than 16 years. The key difference seems to be whether they carry the burden alone or whether they can share it with others. Many HIV+ people say, “It is not AIDS that is killing us, it is the way we are treated.” One young woman shared the experience of testing positive when she fell pregnant and of staying at home for almost two years. She was so afraid that someone would find out that she cut herself off from social contact, and got sicker and sicker. It wasn't until she joined a support group and shared her pain that she began to get better.

Why Is There So Much Stigma?

AIDS is so stigmatized because it is a sexually transmitted disease, wherein South Africa one-quarter of all women aged 16-25 are infected, yet only 1 in 14 young men of the same age. Incredibly high rates of sexual violence in South Africa play a role and over two-thirds of women say their first sexual experience was not their choice.

The church must speak out about sexual violence and unequal sexual relationships, it cannot throw the first stone. Sadly, faithful married woman remain more at risk than unmarried women, because they cannot negotiate for condom use.

AIDS is a transmittable terminal disease, so it should be the church's role to offer hope. Who else can offer this hope in Christ? HIV+ people living with the virus, especially long-term survivors, should be invited to share their stories: we must break the silence. We must deal with some basic fears and talk about how the disease is and is NOT transmitted. “What if there is an HIV + child in Sunday school, and he bites my child? Can my childcare provider put my child at risk?” Facts must be taught and HIV+ people must be visible in the structures of the church in order to dispense these myths.

People must know about anti-retroviral medicines and where to obtain them. Churches must offer practical support, nutrition for those who need it, and income generating opportunities for others. The stories of HIV+ Christians with passionate and living faiths must be shared and celebrated, for so many are drawn to God at this time of crisis and discover new life as they face their own mortality.  

Many people say that the hardest place to disclose your status is in the church. Jesus stands with open arms saying, “Come unto me all ye that are heavy laden,” but church members stand in front of him with pointing accusing fingers. Because it is a sexually transmitted disease, many believe it to be a judgment of God.

Stigma in the Sanctuary

The first challenge for the church is to say, in the words of South African Archbishop Njongonkulu Ndungane, “We must shout from the rooftops that AIDS is not a judgment of God, it is a disease.” Many people say that the hardest place to disclose your status is in the church. Jesus stands with open arms saying, “Come unto me all ye that are heavy laden,” but church members stand in front of him with pointing accusing fingers. Because it is a sexually transmitted disease, many believe it to be a judgment of God.

Others believe HIV/AIDS is one's own fault; that it's a result of a lifestyle choice. People say they are disconnected: “But HIV/AIDS is out there. It's not something that affects me, I don't have it. No one I know has AIDS.”

“Our Church Has AIDS” is written across a striking t-shirt that some of us wear, with an image of an AIDS ribbon wrapped around the cross, to raise consciousness. It provokes strong responses. People see the shirt and say, “What church do you go to? My church doesn't have AIDS.” They don't really get the point, which is that the body of Christ is suffering, including our church.

What are you doing about it? Would you wear a t-shirt saying “Our Church Has Cancer?” Certainly. Why not “Our Church Has AIDS”? Do you believe God sends disease as punishment or for any other reason? That's not the God we worship.  

At the Fikelela AIDS Project in the Anglican Diocese of Cape Town, we are committed to fighting stigma. We mobilize churches to start HIV/AIDS task groups, which are charged with educating their own congregations by getting HIV/AIDS onto the agenda. At that point, people can put up a sign saying “Our Church Is HIV/AIDS Friendly” as a visible sign of this commitment. Then they look at reaching out into the community. Some parishes are involved in orphan support, some in running support groups for adults. Others help practically by supporting AIDS wards in hospitals or hospices, and by pairing with parishes with high HIV rates.

“Sssh, you can't talk about the HIV here,” she will say. We cannot take this person all the way to her home, but just to a nearby corner. The problem is that our car's bumper sticker, featuring an AIDS ribbon, would indicate to her neighbors who we are. We can't do anything about HIV if we're afraid to talk about it.

In the areas with the highest HIV-prevalence rates, offering support groups for those who are infected remains an invaluable ministry. Fikelela helps to empower these support groups with trainings, income-generation projects, and also by encouraging them and the churches that support them. Oftentimes, while visiting the homes of those infected with HIV and too sick to come to the support group, we will meet a young woman who has not told her family she is HIV-positive. In such an instance, we can't openly talk about why we are really there. “Sssh, you can't talk about the HIV here,” she will say. We cannot take this person all the way to her home, but just to a nearby corner. The problem is that our car's bumper sticker, featuring an AIDS ribbon, would indicate to her neighbors who we are.

We can't do anything about HIV if we're afraid to talk about it.

There are five million people in South Africa living with the virus, and 660,000 children are HIV-positive. We cannot change the world, but we can make a world of difference in the lives of one or two or ten, and together we can word for a world where nobody lives or dies alone and rejected.  

What Can I Do?

All across the world, AIDS affects more women than men, more young than old, more poor than rich, and particularly those who are migrant laborers, sex-workers, and intravenous drug users. Every day, throughout the world, the number of people dying of this disease is equivalent to 20 jumbo jetliners crashing at once.

These HIV people are not just far away, but in your community, and probably even your neighborhood. Educate yourself. With your time and talents, how can you best reach out? Can you advocate and take action for those infected and affected by HIV all over this world? What is your government doing with your tax dollars to fight the global AIDS pandemic? Can you, your church and/or local civic organization get together to apply for federal funds? You can't do everything, and neither can we, but we can all do something – so reach out!

Ed. Note: for more ways to get involved to address the HIV/AIDS pandemic, visit Episcopalians for Global Reconciliation (EGR), the Global AIDS Interfaith Alliance (GAIA), the Episcopal Public Policy Network, and Episcopal Relief & Development (ERD).

The Rev. Rachel Mash is the coordinator of the Fikelela AIDS Project , and an assistant priest at the parish of St. Mark's in the District Six community of Cape Town, South Africa. During this past year, Bungee Bynum was a volunteer for the Fikelela AIDS Project from Holy Trinity Episcopal Church, Georgetown, in the Episcopal Diocese of Lexington (Kentucky).