Zethu Mqopi’s* hazel eyes flash in nervousness. Her hands, scarred from years of hard labour and domestic accidents, twitch compulsively. She tries to hide them in her lap.
Mama ka Blondie – a local villager in her late forties – is the helper on duty this evening. When she turns her back to fetch boiling water from the fire for tea, Zethu is prepared. She snatches a slice of bread and a tea bag, quickly stuffing them underneath her lilac sweater, where she’s tied a belt.
Then she glances at her five-year-old daughter, Sisanda*, and at the little girl’s plate, on which there is half an igwinya (vetkoek) and a few salad leaves.
When Sisanda springs to her feet to chase a hen and her brood of cheeping chicks across the cavernous mud hut, Zethu steals her daughter’s food, hiding it in a jersey pocket.
In the hut, which serves as the compound’s dining hall, acrid smoke from a smouldering fire mixes with the musty aroma of freshly baked bread.
Zethu, successful for now in her never-ending quest to hoard food, calms down. Her eyes glaze over; her hands are now motionless.
Suddenly she is on her feet again, this time to take another tea bag from a box on a table. She places it methodically in her chipped green tin cup, and shuffles towards Mama ka Blondie for some water.
Sisanda tells her mother: "Don’t burn again, mummy, the water is hot from the fire." Then the girl gambols away and continues her game of catch.
Home for the mentally disabled
Zethu is a resident of Ikhaya Loxolo, a home for mentally disabled children and adolescents in Hobeni Village near Elliotdale in the former Transkei. The "Home of Peace" survives with barely any funding.
"Zethu stores food like a hamster; she usually hides it under a mattress in her room," says the home’s director, Alex Gunther. Zethu forgets to feed her child if she’s not reminded to do so, she says.
Gunther is from Germany. She’s in her mid-thirties and speaks isiXhosa fluently. She says Zethu was born to an alcoholic mother.
"She was brought to us five years ago by hospital workers who found her abused and neglected. Her clothes caught alight on the cooking fire. She didn’t understand the dangers of fires or how to cook and has scars all over her body."
According to Gunther, Zethu was "starved" as a child.
"To her parents, she was worth far less than her 'more valuable’ mentally able siblings, who competed for food in a home where it was scarce. Now if we don’t stop Zethu, she will eat until she bursts."
Hobeni Village in the Eastern Cape (Darren Taylor)
Only home for the disabled in Elliotdale
Gunther is an educational specialist in the training and care of mentally disabled people. Ikhaya Loxolo is the only place for such people in the Elliotdale district, where the Eastern Cape social development department estimates 93 610 people live.
Gunther says the home only has space and funding for 10 patients at a time. "Even that’s pushing it," she mutters, grimacing.
Ikhaya survives on donations from a few local individuals and companies, from organisations and individuals in Germany, and the food and meagre proceeds from a tiny organic farm, from which it produces vegetables and fruit for residents. The home also tries to charge resident fees – normally about R600, which is half a monthly disability grant.
"The children who are here have access to at least some of the benefits of part of their grants. Most mentally disabled children in Hobeni don’t see any of it. They’re not viewed as 'worth enough’ to spend even a little bit of a grant on," Gunther explains.
Ikhaya Loxolo consists of a few mud huts that Gunther and her husband and some locals built themselves. There are no special treatment facilities, no running water and the only toilets are self-dug long drops.
Some of the home’s original residents arrived here when they were teenagers and have grown into adults – such as Zethu, who is now 23.
She has never been diagnosed by a medical mental health expert and came to Ikhaya Loxolo without any medical records.
Gunther suspects she suffers from foetal alcohol syndrome, which has been found to be closely associated with intellectual disability and unusual behaviour such as poor impulse control.
Abusive relationship "at best"
Sisanda is the result of what Gunther terms "an abusive relationship at best". A married man, who knew Zethu was mentally disabled, "lured" her into having sex with him a few times.
When she fell pregnant, he claimed he didn’t know her.
"It was probably more like rape than a sexual relationship, as Zethu didn’t know at all what was happening to her," says Gunther.
At Ikhaya Loxolo, Zethu has learnt how to cook, clean and to write her name. Gunther says when her mother found out about her daughter’s new skills, she arrived at the centre and demanded that Zethu leave with her.
"She said her daughter had to come home to cook and clean for her, that she was now good for at least something," she says.
During this time, Zethu’s mother received both her daughter’s government disability grant of about R1 200 and Sisanda’s child grant of about R300.
"Zethu and Sisanda didn’t see a cent of it. The family used the grant money to build a house and to buy luxuries such as meat," says Gunther.
After nine months of abuse, Zethu secretly packed her bags and returned, with her child, to Ikhaya Loxolo.
"That situation is the norm for mentally disabled people in this area; it’s nothing special," adds Gunther.
"Many people in this area consider mentally disabled people not to be human beings. They don’t believe they have any human rights."
Rape is a reality for these childrenIn 2011, Ikhaya Loxolo had 10 residents, nine of them female. They were between 10 and 22 years old.
"All nine had been raped previously – some repeatedly," says Gunther. "The worst thing is that it happens so often that it’s normal to the community. It’s what happens to a mentally disabled girl."
One of the girls was raped when she fetched water from a spring near her home. She was 10 at the time. Another, a 14-year-old, was raped when she went home for the Christmas holidays.
"There was no one to look after her and a drunk guy came into the house," says Gunther. "He locked the door and raped her."
The headman of the Hobeni area, Patrick Fudumele, says he’s done his best to "put a stop" to the rape and abuse of mentally disabled girls and young women, with little success.
"Rape is like a plague here. A lot of women and girls get raped but it’s especially the mentally disabled girls. These men know very well that these girls are mentally handicapped. That is why they target them, because they’re easy prey: they can’t fight back and mostly they can’t identify their attackers."
When a mentally disabled girl is raped in the district, says Gunther, her parents are "sad" about it, "but not shocked, because it happens all the time".
Nosiviwe Maphasa sweeps the dining hut at Ikhaya Loxolo (Darren Taylor)
In Ikhaya Loxolo’s dining hut Nosipho Jwara* has started to sweep the mud floor with a short straw broom. Zethu helps Mama ka Blondie wash the dishes, while Sisanda never tires of chasing chickens.
Nosipho has cerebral palsy. She contracted meningitis when she was seven, paralysing one side of her body and affecting her brain. But she is fiercely independent and refuses help with tasks.
Her mother took her to Ikhaya Loxolo four years ago, in an attempt to keep her safe from rapists.
Gunther says the woman told her: "One day, I am sure they will get Nosipho and she will be raped, so please she must stay here with you."
Hobeni is not unique in the prevalence of rape of disabled women. United States research has shown that 90% of mentally or physically disabled people will experience sexual abuse at some point in their lives.
According to educational psychologist Dick Sobsey from the University of Alberta in Canada, 68% of disabled girls and 30% of boys will be sexually abused before their 18th birthday.
Shackled "like a dog"
Fudumele says a family in his village until recently kept a boy "who sees visions" shackled, because people believe he is possessed by an evil spirit.
"He was kept on a chain, like a dog, because everyone was afraid of him," the headman says.
Three years ago, the mother of a 12-year-old severely mentally disabled girl tied her legs together "permanently", says Gunther.
"The mother said she was tired of always chasing after her daughter, who would wander off a lot."
The girl was thin and malnourished and couldn’t feed herself. She had no control over her bodily functions.
"When I asked the mother if she had nappies for her daughter, she said: 'It’s not necessary, just feed her as little as possible so that she doesn’t soil herself. That’s what I do at home’," Gunther says, shaking her head.
On her bed in her room at Ikhaya Loxolo, Nosiviwe Maphasa* (17) sews a button on another resident’s shirt. She works carefully, but looks up to say shyly: "I want to sew and fix clothes one day when I’m finished learning. I love pretty clothes."
When Nosiviwe was two, a pot of steaming umngqusho (samp and beans) fell on her head and face.
Her grandmother, Zinhle*, says: "From then on, she had mental problems. She can’t distinguish between right and wrong. When she menstruates, she won’t clean herself. She will walk around in those bloody clothes all day long."
When Nosiviwe was eight, her mother left her and her brother with her grandmother to visit Cape Town, and never returned.
"To this day, her mother has never asked about her," Zinhle mumbles.
Then she sighs and bows her head, saying: "Nosiviwe knows her mother doesn’t want her. It’s hurt her and it’s made her ashamed of herself."
Nosiviwe returns home over weekends, to be with her grandmother. Her brother, who is in his early 30s, also stays with them.
"When my granny goes to church he drinks beer and hits me with a big stick. He hates me and I don’t know why," says Nosiviwe.
Her grandmother adds: "I’m powerless against this young man. He’s much stronger than me, so I can’t stop him. And I have nowhere else to leave Nosiviwe."
Zinhle blames a "bewitching" for her granddaughter’s condition.
"That heavy pot that fell on her head was on the fire on the ground. How did such a small child manage to lift it in such a way that the umngqusho spilled on her?" she asks.
"It must be the doing of a witch."
Mama ka Blondie agrees.
"Witches send snakes to such children in a dream. When the child wakes up, he’s mentally ill. 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 for the rest of his life.
Mama ka Blondie works for Ikhaya Loxolo (Darren Taylor)
Because of a seemingly unshakeable belief in witchcraft in Hobeni, mentally disabled children in the district are more often than not stigmatised and rejected. Many villagers believe they are inherently evil.
"People ask me: 'How can you work with such people? They are possessed by demons. They’re going to make you just as crazy," says Mama ka Blondie.
She comments: "Actually these children are 'double-cursed’: by the evil spirits and by their own flesh and blood. Just because these children are victims of evil witches does not mean they must become the victims of evil human beings as well. But, unfortunately that is what happens."
Some studies have shown that only 3% of cases of sexual abuse or violence against people with disabilities are reported to the police.
But Gunther says as far as Hobeni is concerned, the abuse of mentally disabled people is "almost never" reported.
"The mentally disabled are seen as worthless and if they are abused and raped or even killed then the attitude is: 'So what? Why should we report it?’"
No one really knows how many mentally disabled children and adolescents live in Hobeni village, which is situated in the Oliver Tambo district.
According to the Health Systems Trust’s latest District Health Barometer, the district has the fewest women visiting pregnancy clinics, the highest number of babies dying within the first week of their lives and the most children dying before their fifth birthday.
"You need a working health system to diagnose and record mental disorders, which the Eastern Cape doesn’t have," says Stine Braathen of Stellenbosch University’s psychology department.
Braathen is currently researching mental health in the former Transkei for her PhD.
"You won’t find figures on mental health disorders anywhere in the area."
Some studies estimate that there are about one million physically and mentally disabled children in South Africa – an average of about 5.8% of all children.
However, in 2009 the South African Stress and Health Survey found that over a 12-month period 17% of Western Cape children and adolescents suffered from mental disorders such as depression, poor impulse control and anxiety.
Research has demonstrated clear links between poverty and mental illness as well as intellectual disability: mental disorders and low IQs are higher in poorer areas. And OR Tambo is one of the poorest districts in the country, with one of the highest unemployment rates.
While there is little reliable data, a 2010 University of Cape Town study reported that almost a quarter of intellectual disability cases in South Africa are congenital (present at birth) and most of these conditions, caused inter alia by babies not getting enough oxygen during birth, are preventable.
The closest hospital to Hobeni is Madwaleni, near Elliotdale, which does not employ a single psychologist, says Eastern Cape health department spokesperson Sizwe Kupelo.
He also confirms that no nurses or doctors at the facility have any "psychiatry training". As the Eastern Cape does not have child psychiatry wards at its health facilities, mentally ill or disabled children are either seen as outpatients or are admitted to general wards.
Kupelo says records of these outpatients and the details of those admitted to general wards are not sent to the department; they are available only at the hospital that treated the patient.
"That is why I can’t tell you how many mentally disabled children have gone through our system in Oliver Tambo," he says. "We don’t know."
What is established is that the South African Social Security Agency pays about 32 000 disability grants every month in the district. Disability grants are issued only once a medical doctor has certified the grantee to be either physically or mentally disabled.
According to research published in the South African Medical Journal, mental disorders rank third in contribution to the country’s overall disease burden.
'In 2006, Gunther says, she and a community leader "knocked on about 2 000 doors" in Hobeni to try to establish how many mentally disabled people there were. They did this, she says, after officials from the provincial social development department told her there is no need for Ikhaya Loxolo’s services in Hobeni because there are no mentally disabled people there or in any of the surrounding villages.
Gunther found and recorded more than 50 mentally disabled people, each of whom was receiving a government disability grant.
"That was in Hobeni village alone," she says.
Government said "no need" for help
She sent their names, ID numbers and "exact locations" to the department, but says she received no response.
"When I phoned and asked if they got the information, they answered: 'Yes, we got your list. Why did you want a reply? What do you expect from us?’" Gunther recalls.
The department confirms that there is no government-funded "special day care centre" or school for mentally disabled children in the Elliotdale area.
The closest of the nine facilities that the department partly funds in the former Transkei is in Mthatha – four hours’ drive away, in public transport, in a community where almost no one has access to private transport. And when it rains? the is no transport because the dirt roads become impassable.
Gunther submitted funding applications to the department in 2004, 2005, 2006 and 2008.
In 2004 and 2005, she says she was told there was no budget for facilities for the disabled in Elliotdale.
In 2006, she was denied funding based on the premise that there were no mentally disabled people living in the district and in 2008, she says social development officials told her: "You are not under the government which is why we cannot help you. We do not help private organisations."
Eastern Cape social development spokesperson Gcobani Maswana says the department does not have any record of Ikhaya Loxolo’s funding applications.
"We did advise that organisation to follow a process that will assist them to source funding" – including registering as a non-profit organisation and "engaging with traditional authorities" in the area, says Maswana.
However, according to the government’s own website that recognises these organisations, Ikhaya Loxolo was registered as a nongovernmental organisation in May 2004.
A departmental official confirmed that the registration is still valid.
Patrick Fudumele, headman of the area, supports Ikhaya Loxolo (Darren Taylor)
A grant alone is not enough
Hobeni’s headman and other district traditional leaders lent their support to Ikhaya Loxolo in 2004, when Fudumele donated land to the project.
"I realised that mentally disabled children in Hobeni are not safe without this project. I send kids here myself," says Fudumele.
"It’s a mystery to me that Ikhaya Loxolo gets no financial support from the government when it’s the only facility for the mentally disabled here."
He says he’s been trying "for years" to speak with state social workers and officials in Elliotdale "to advise them on how important it is to look after the mentally handicapped. But they don’t listen. It makes me so sad."
Fudumele’s eyes harden.
"The government, health officials and social workers here consider their job to be paying out disability grants. So they just act like charity workers and not developers of their people. They expect that little money to be a solution to mental disability," says Fudumele.
"Proper care in a proper environment is the solution, not paying money to a disabled person’s relative. I’m angry. They don’t even monitor if parents or relatives are using the grant funds to help the mentally disabled person. They pay the grant and then they wash their hands and say: Job done."
Back in Ikhaya Loxolo’s candlelit dinner hall, Sisanda plays hide and seek with her daughter. It is a one-sided affair, since Sisanda can count to 20, while her mother struggles to count past seven.
Sisanda crouches in the near-darkness under a table before jumping out and screaming to scare her confused mother. The little girl cackles in delight when Zethu whoops in apparent fear.
Sisanda then pulls a dirty pink beanie over her head, grasps her mother’s hand and whispers: "Come mama, let’s go to bed."
* Names have been changed to protect their identity
[Note this article was originally published on 8 November 2013]
Tell us what you think – make a comment and rate our story on a scale of 1 (really bad) to 10 (excellent). We’d love to hear from you.
Have something to say? Tweet us on @Bhekisisa_MG or Facebook us on @Bhekisisa.Health
Put mental health top of mind
We could be just months away from knowing whether Depo-Provera use is linked to a higher risk of HIV infection in women.
Interested in health and social justice reporting and willing to put in the hours to do it? This internship might be for you.
Bhekisisa's latest policy dialogue takes a deep dive into one of the biggest challenges facing SA's HIV response at the 9th Aids conference.
Bhekisisa means "to scrutinise" in isiZulu
In South Africa, Zulu patients who would like to be thoroughly assessed by a doctor, would ask the physician to "bhekisisa" them.