It’s a life of shame, humiliation and stigma during covid-19
In South Africa, stigma and discrimination have mostly been associated with persons living with HIV and tuberculosis, but in the Mangolongolo community, Johannesburg, they are now also causing fear and panic among coronavirus survivors.
The unpaved road is riddled with many bumps, like that of an abandoned village. Coming from the R29 Main Reef Road, the narrow lane takes you to the shacks from your right. It is 3pm and the heat is unbearable. Crowds of people huddle close to each other in small circles, while loud maskandi music conceals the sound of the community.Situated on the outskirts of Johannesburg, Mangolongolo is inhabited by approximately 3 000 people.
This community is blighted by lots of challenges, not least among them a range of health issues. The situation is complicated by a rising problem of denialism, along with stigma and discrimination which have taken hold during the covid-19 pandemic. In February 2020 the World Health Organisation (WHO) declared that fear of the pandemic had resulted in stigma and discrimination for those who recovered from the virus. The United Nations (UN) echoed this, noting that stigma and discrimination, exacerbated by covid-19, are major concerns.
The virus man in a small community
For communities such as Mangolongolo, however, stigma and discrimination against covid-19 survivors are made worse by the lack of knowledge and entrenched cultural beliefs. “I will never get the virus and I don’t think I will ever get tested for it. The less I think about coronavirus, the better,” said Blessing Nqiwa (25), a resident of Mangolongolo.
Locals say there is only one man believed to have had coronavirus in the entire community. They refer to him as ‘Mister Covid’.
“I will call for you the only person I know who was taken by the covid-19 response team,” says a woman in her 60s who sells fatcakes at the main entrance to the community. I can’t help but notice the looks of concern and consciousness from people around. I am shocked to discover that not one of the people who have formed a ring around me is wearing a face mask.
I am the only one with a mask on. It feels as if I am an alien on a different planet. I feel I must take the mask off to get a sense of relief.
The streets look busy, with vendors hawking cigarettes, cow heads and other food items. The drains are stocked with garbage. It does not take me long to learn that wearing a face mask is considered strange in this community, even in the thick of the coronavirus. This heightened sense of denialism fuels the disturbing degree of stigma and discrimination.
For one man (Mister Covid), this is particularly concerning. Even though he was taken to a treatment centre to be tested for covid-19, Victor Shezi*(37) tested negative. Shezi’s journey back home was, however, shockingly met with consternation by the people of his community. Afraid of contracting the virus, people shunned him. After he spent a week in the hospital, his community became worried because they thought he might have contracted the virus and could be a potential carrier.
Amid coronavirus pandemic, the world is also dealing with the social stigma of covid-19 survivors during this time. However, the WHO advises people to take effective action to help combat the disease and to avoid fuelling fear and stigma. Photo: Zikhona Klaas.
“I was surprised when I heard that people said I had covid-19,” Shezi says, quirking his eyebrows. “I never thought I’d be considered a threat to the people I live with every day.” But the stigma and discrimination only raised Shezi’s confidence and his awareness about the pandemic.
When he finally comes to meet with me outside the main entrance, I am amazed at his sense of consciousness. While my hand is readied for a handshake on his arrival, it is rejected with an elbow greeting. I feel embarrassed for a moment, but I am impressed by his level of awareness. He wears a black BMW customized face mask. Unlike other people, Shezi looks very confident and well informed about safety measures.
“Some people have a problem that I wear a mask and don’t allow anyone to come close to my spaza shop window without a mask,” he says. “I am labelled for this and even called names, but I am unmoved by these names because I know all about the risks of coronavirus, and how to protect myself.”
Shezi got sick in August, during level two of the national coronavirus lockdown. He had a high fever, sore throat and difficulty breathing. He spent a week at the local Johannesburg public hospital, Charlotte Maxeke, and was discharged after testing negative. He says even children young enough to be his kids call him names every time they pass by his shop.
He invites me to his home and shows me around his house. It has a long brown board that divides his spaza shop from his bedroom, which is very noticeable from the door. The spaza window is so small, only a hand could fit through it. Just outside his house, two women and a man sit on a brown bench, sunbathing. I join them.
“I heard that people who have the virus are not supposed to come back to the community because they can be a danger to us,” says Smangele Ntuli (35). “I didn’t want Mister Covid (Shezi) anywhere close to me. I am already dealing with my own disease. I couldn’t afford to get sick again.”
Shezi could not be saved from the stigma and discrimination even in a public gathering like the one we are having.
“We don’t know who came up with that name,” giggles Welile Shabangu, a neighbour, who is amused by the question. “It’s probably people from the main entrance: they know everything that happens in this community.
“I panicked for a while when he went to the hospital, but I doubted he had the virus,” he says.
Disease labelling deepened in South Africa
A survey by the National Institute of Health says about “20% of people experienced anxiety, fear and thinking too much” as a result of the coronavirus outbreak.
This ties into 2019 research by BioMed Central, which found that stigma enables varieties of discrimination that ultimately deny people full social acceptance, reduce their opportunities and fuel social inequalities. The research further notes that stigma could reinforce stereotypes of people with various health conditions.
Throughout the pandemic, there have been concerns that people with underlying medical conditions are at heightened risk of fatality. This fear is compounded by pre–existing challenges, with reports of increased levels of stigma and discrimination suffered by people living with HIV in countries such as South Africa.
A civil organisation, the African Centre for the Constructive Resolution of Disputes (ACCORD) identifies South Africa as one of the countries with the highest prejudice and discrimination against covid-19 patients. In other parts of the continent, such as Kenya and Ethiopia, stigmatisation has been in relatively verbal and physical form, says ACCORD.
A line of people standing outside the Malvern clinic entrance without masks. Most of the residents in this region, including Mangolongolo community go to this local clinic for WI-FI connection and not for covid related inquiries. Photo: Zikhona Klaas.
In the Mangolongolo community, Shezi is not alone. A family had to relocate a relative who had TB and also contracted the coronavirus. The patient had to be moved away because of the fear of being labelled a virus carrier, says Ntuli.
“We were all afraid when we saw the covid response team wearing full white clothes at our gate,” said Gugu Shabangu, a resident who witnessed Shezi’s departure to hospital. “Things were never the same. He is a businessman around and had customers who bought from him before that.”
Shabangu says many people, some even looking out from their houses, were shocked by what had happened. “I think the attitude of people towards Shezi changed from that day. It started as a joke and never changed,” she says.
A Wits University professor, Lenore Manderson, compares the coronavirus stigma to that of the HIV epidemic in South Africa.
“We have seen in our history that denying diseases is either to control behaviour or to control a country as a whole,” she says.
She concludes that stereotypes could fuel the transmission of the disease in communities. The WHO has also reinforced this view by observing that the spread of the virus could be worsened by stigma and discrimination that force people to hide their illness.
Alison Best, a TB HIV Care communication manager, highlights these issues as serious problems for a response to the pandemic, in an article.
“As a result, blaming and shaming will mean that those affected by the disease may find it difficult to seek help or disclose their positive status to others, thereby inhibiting the process of testing, isolation and contact tracing,” Best says.
Meanwhile, the problems of stigma and discrimination during this pandemic stretch beyond infection rates in communities. More than ever, health workers are perhaps at the worst receiving end of the situation.
While they risk their lives to save others, many end up being ostracised in their communities because of the nature of their job and their levels of exposure to infected patients. In Nepal, for example, the Nepali Times reports that many health workers were even threatened by their neighbours and landlords, who feared they would spread the virus.
Lizzy Poe*, 30, a nurse at Johannesburg private hospital, Netcare Garden City, has suffered stigma and discrimination in public transport many times. “I remember one day I was running to get into a taxi, and I had shortness of breath and started coughing non-stop,” says Poe. “One passenger got out of the taxi with a bad attitude afterwards. I felt bad.”
Poe later tested positive for coronavirus and had to protect her children because of fear, by not telling them she had the virus, as a means of controlling the situation.
For Manderson, social stigma poses a threat of sustaining the spread of the virus. “People will refuse to get tested or reject the behaviours required of them to protect others,” she says.
More education, less stigma
President Cyril Ramaphosa has called for the condemnation of stigma and discrimination of any form in South Africa.
“Just as we came together to promote acceptance of people living with HIV and stood firm against victimisation, we must show understanding, tolerance, kindness, empathy and compassion for those who are infected with this virus, and for their families,” the president has said. This call is yet to be heeded in communities such as Mangolongolo.
Pastor Thembinkosi Zimba, a religious leader at Mangolongolo, explains that denialism in the area exists because the community is already dealing with many social issues.
“Already our people are facing challenges that are threatening their livelihoods. Covid-19 seems like it was not the worst challenge they faced during this lockdown,” he says.
Zimba hosts church cells at the community hall every Wednesday, from 6pm to 7pm. Even though he admits it is difficult to identify or acknowledge discrimination at church because of the religious stance, he believes fighting stigma and discrimination must be a collective effort.
“As a church, we call people who have recovered from the virus and encourage them by preaching the scripture to them,” Zimba notes.
It will take a serious attempt to educate communities that have little or no knowledge about the pandemic. To this effect, the Gauteng provincial government uses education and social mobility to fight stigma and discrimination by targeting people from various backgrounds.
“A ward-based strategy was implemented that involves various government and non-governmental organisations and that gears towards intensifying the response to the covid-19 pandemic in the province,” says Kwara Kekana, Gauteng Department of Health spokesperson.
The Gauteng department of health deployed over 8 000 trained field workers to screen and test people in the province, in efforts to fight the covid-19 pandemic. Photo: Zikhona Klaas.
At a community level, the provincial government has intensified public health awareness about the virus through community radio stations, at taxi ranks and during grant collection days, Kekana says.
Shezi, even though he did not have the virus, is slowly getting used to being called ‘Mister Covid’. He spends most of his time with his close friends and hopes he might be reintegrated into his community once again.
His best friend is deeply worried about him being called ‘Mister Covid’. Shezi struggled to find his feet after returning from the hospital but received support from his close friend, Brenda Mhlanga.
“I would have been infected if he had the virus,” says 32-year-old Mhlanga. “I cooked his meals and ensured that his business was taken care of. It just happened that he got sick with flu at the wrong time.”
He has been a resident in the Mangolongolo community for nine years and now sells essential goods in his spaza shop.
“People will always speak badly of you,” he says. “I don’t owe anyone an explanation, so I will just keep quiet until they forget completely. Hopefully, after this pandemic,” he concludes, his face shining with a smile.
FEATURED IMAGE: Amid coronavirus pandemic, the world is also dealing with the social stigma of covid-19 survivors during this time. However, the WHO advises people to take effective action to help combat the disease and to avoid fuelling fear and stigma. Photo Zikhona Klaas.
