'Home of Peace' Works to Save Mentally Ill in South Africa

HOBENI, SOUTH AFRICA —  This is Part One of a five-part series on the mentally disabled in South Africa Continue to Parts: 1 / 2 / 3 / 4 / 5
It’s just a circle of simple mud huts with roofs of thatch and floors of dung, in a mist-shrouded valley among rolling hills near the village of Hobeni in South Africa’s Eastern Cape province.

But for the residents, Ikhaya Loxolo, “Home of Peace,” is a paradise of love and acceptance, where they feel worthy, in contrast to the world beyond its fences, where they’re generally despised.



In this underdeveloped area, in the former Transkei homeland, where a racist government once tried to confine Xhosa people, nine out of ten adults are unemployed and one in four is infected with HIV. Tarred roads are rare, as are hospitals and clinics.

“In heavy rain we can’t even get out of here. I might die, you know, because I can’t get to a doctor…. As a first world person you can’t understand [that], if you haven’t lived it,” said the home’s director, Alex Gunther.

In a sea of trouble and want, where many children die from illnesses as simple as diarrhea, Ikhaya Loxolo is one of the few places where sanity prevails…even though most of its inhabitants are mentally ill and disabled.

There, hunched over a blazing fire, is the two-meter-tall man with schizophrenia who seems locked in frenzy, his arm and leg shaking uncontrollably, his eyes flaring in apparent confusion. Alongside him, playing with a toy gun, is the child with Down Syndrome - the one the community calls “the boy with the flat face.” Then there’s the young woman hobbling on a crutch and falling in the dirt, her leg twisted into permanent spasm, and her friend, intellectually disabled because of fetal alcohol syndrome, mesmerized by a steaming pot of boiling water.
They are the palsied, the spastic, “the retarded,” the rejected, “the accursed,” as some in the surrounding ring of villages have branded them.

Superstition

“The people here don’t love mentally disabled people as much as non-disabled people. In fact, sometimes they don’t love them at all. They hate them,” said a bustling Mama ka Blondie, Ikhaya Loxolo’s cook and a community elder. “People here tell me, Isn’t it clear to you why we detest these mentally disabled people? It’s because they’re useless. You ask them to do something and they can’t do it. You have to do everything for them all the time while they do nothing, except cause trouble. They are strange curses....”

Gunther explained that poverty and other social problems, as well as a dire lack of good medical care, are responsible for the region’s high rates of mental sickness.

“It’s normal for a woman to have between five and eight children here. They maybe give birth to their first child in hospital and then after that they give birth at home. So when they give birth and the child’s brain is damaged from lack of oxygen there’s no doctor there to diagnose any problem. Often they don’t take their children for vaccinations because the clinics are so far away,” she said.

Up until recently the local public hospital was staffed only by nurses. “It’s in the middle of nowhere and is so rundown that no doctors wanted to work there,” said Gunther. “So then who was around to diagnose a child who has Down Syndrome? No one.”

But many in the former Transkei, including caregivers at Ikhaya Loxolo, blame mental illness and disability on a legion of superstitions.

“Witches project bad thoughts into babies in the womb. That’s how those children get mentally damaged. They send snakes to those babies, snakes that no one else can see,” ka Blondie said. “It could be that the mother or someone from the child’s family has done wrong to someone that they did not know was a witch. Then that witch takes revenge by cursing the child.”

Village sangoma, or traditional healer, Zwelisithile Bendlela, said “mental problems” are caused by evil spirits.

“It is easy to identify someone who is not right in the head because of an evil spirit,” he maintained. “You will speak to them and they will answer you with something that is just nonsense. They also see visions that you and I cannot see. That is the work of the evil spirit.”

District chief Patrick Fudumele said ancestor spirits who have been disrespected cause children to be born “mentally damaged.”

“Most of them, they are just being punished by the ancestors. The ancestors can just punish, even me too. They can punish me if I am not doing the ceremonies according to their instructions.”

Fudumele said examples of this abound in the area.

“There is one person near here who became mentally handicapped like this. She did not listen to the ancestors who told her in a dream to be a traditional healer. She did not slaughter a goat and she did not make beer for the ancestors. That is why she is today like she is.”

The chief said to be cursed with mental illness is a great shame in the region and those afflicted with it are considered a “disgrace” to a family and are discriminated against.

“The one young man I know, people laugh at him. That guy, they say that he is the monkey. He gets angry very quickly if you say, ‘You are a monkey.’ When we were growing [up], even me too, we were just treating him like that,” he acknowledged.

Tied up

But the harm done to those with mental problems in the Hobeni area often transcends mere name-calling.

“You know you are in a terrible situation when you consider the lucky ones to be those who are left alone to roam the countryside in rags,” said Gunther.

As an example of the kinds of patients given shelter at Ikhaya Loxolo she referred to a severely mentally and physically disabled 12-year-old girl.

“She soils herself all the time; she can’t go to the toilet by herself. She has to be fed; she can’t eat by herself. Even though she can’t walk properly, she still often wanders off by herself,” Gunther explained. “So now the mother at home, she is tying her legs together so that she doesn’t run away, so the mother doesn’t have to run after her. And also, when we asked the mother ‘Can you afford to buy nappies [for your daughter]?’ She said, ‘No, just don’t feed her too much so that she doesn’t soil herself all the time. That’s what I do at home.’”

Gunther described the girl as “very thin, extremely malnourished and in a very poor mental state.”

Ikhaya Loxolo, which depends on donations from individuals and companies in South Africa and abroad, wanted to care for the girl but couldn’t afford to do it for free. “We would love to but we cannot because she needs her own personal caregiver all day every day and we have to pay that caregiver,” said Gunther.

When the home asked the girl’s mother to pay its standard monthly fee – half of the disability grant of about 1,000 rand [US$100] the woman receives on behalf of her daughter every month – the mother refused and immediately withdrew the girl from Ikhaya Loxolo.

“That’s the norm here. Most people aren’t willing to spend any money on their mentally ill or disabled children because they regard them as worthless…. That girl, if she is still alive, is probably 14 now,” said Gunther.

Chained and raped

Stories of people with mental illness and disability being imprisoned are common in the Hobeni region.

“There is the one case I know of where the family kept the boy in chains because they were scared of him, because he had the evil spirit in him. He was mentally sick. He was kept on a chain, like a dog, because everyone was afraid of him,” traditional leader Bendlela said.

Gunther told of a 16-year-old girl with cerebral palsy who stayed at Ikhaya Loxolo for a few weeks about two years ago. “We took her to the doctor for a thorough examination and the doctor said she’s definitely been sexually active. We suspect she was sexually abused,” she said.

When Gunther put pressure on the girl’s guardian to pay some money for her upkeep and rehabilitation, the relative refused, removed the girl from the home and “hid her” away.

“She haunts us. Nobody knows today where the girl is. If she’s still alive, she’s living back in that abusive environment…. It happens a lot here; the relatives of the disabled people hide them away. They are like prisoners. Their relatives are ashamed of them,” said Gunther.

She recalled two sisters [12 and 14] and their brother [18], intellectually disabled because of fetal alcohol syndrome, who stayed for a period at Ikhaya Loxolo.

“They are orphans, living with their aunt. Also the full fees for them were never paid to us from their disability grants. When we put pressure on their relatives, they removed them and took them home. Those two girls were then raped. The aunt is not looking after them. We know they will be raped again.”

No special treatment

Throughout South Africa, and especially in the country’s rural areas, there are few public facilities that care for the mentally ill and disabled. In the former Transkei Ikhaya Loxolo is the only place within a radius of hundreds of miles that offers any kind of help and shelter to such people.

“They are not usually looked after in any special way. The parents or whoever the caregivers are at their home, they leave them alone from a very young age,” said Gunther.

Chief Fudumele explained, “In Xhosa culture, children are expected to look after their parents in old age. But of course mentally ill children can’t do this. So their parents are not willing to invest any money in their development.”

Gunther said this is despite the fact that the government entrusts monthly disability grants to the guardians of individuals with mental illness.

“The disabled person doesn’t see a cent of it, walking around in rags, not being washed, not being fed, being neglected. The rest of the family is eating well, or maybe a parent is drinking the money away or they’re building a house with it or whatever,” said the highly trained mental health educator. “I’ve met many, many families from here and surrounding areas and villages with mentally disabled children and that is what is happening in 90 percent of them.”

Mama ka Blondie added, “The parents take the grant money for themselves. That money does not make them look after their children well. Their [mentally ill or disabled] child wears rags and is fed scraps, like a dog. These parents are not willing to contribute anything to the welfare of their disabled children. Sometimes I think the only reason they keep these kids alive is to get the grant money.”

Fudumele said the towns and villages of the region are filled with the “mentally disturbed” who wander around “aimlessly and almost naked.”

“Some of them they’ve got no trousers. When it is cold like that, you see them wearing a shirt only, rolling up and down here in the street. [Their parents] are not buying even anything for them. They are just using the money for themselves.”

No government help

Ikhaya Loxolo is a not-for-profit organization and doesn’t receive any help from the South African government.

Gunther said when the home opened about six years ago, three officials from the local social development department arrived to inspect it.
“They came to visit, to see the place, and what they said, you won’t believe: ‘What do you guys want here? There are no [mentally] disabled people in this village’…. [Meanwhile] I [had] identified 50 mentally disabled people in our village alone.”

Gunther said she compiled a list of mentally ill people and sent it to the social development department at the nearest town, Elliotdale. “I said, ‘Here are all the mentally disabled people just from one small village; this is why we are here.’ But they never replied,” she said.

Fudumele commented, “It’s a mystery to me that Ikhaya Loxolo gets no financial support from the government when it is the only place in this wide area that’s caring for these people. I can only think that they don’t really want to help disabled people, what they want is to make money out of a project.”

Beauty Mbalela said she had no choice but to spend part of her meager income to place her 12-year-old son with Down Syndrome in Ikhaya Loxolo. “The government is supposed to train people to take care of mentally disabled people and to establish remedial schools for them. But it does not. The only thing government does is to give people disability grant money. That money does not help if there are no facilities available to help and develop these people,” she added.

Charity Petelo, a professional nurse, said before she enrolled her son, who has schizophrenia, in Ikhaya Loxolo, she approached government officials all over the Transkei to plead for help for him.

“Their attitude is always, ‘We as government are giving you a grant for your child and our responsibility, our work, ends there.’ There is no attempt at all from these officials to rehabilitate children like my son. They don’t care about what happens to them at all,” Petelo said.

The social development department at Elliotdale did not respond to repeated requests for comment. But South Africa’s health minister, Aaron Motsoaledi, has previously acknowledged that good state facilities for mentally ill people must be developed urgently and that many more are needed.

In the meantime Ikhaya Loxolo is caught in a constant brawl to stay open, to continue to save and improve the lives of the mentally ill…. And its residents’ quest to be regarded as human never ends.