/ 22 November 2013

The boy who lifts Hobeni’s spirits

Sihle Batiya (13) throws his arms up in the air and sways his body rhythmically from side to side. He gazes upwards in mock reverie, waves his hands, and screams: "Hallelujah! Halleluuujah!"

His rapt audience chuckles. Some of them are his age, some much older. But everyone is fixated on the boy and some have tears of hysterical laughter rolling down their cheeks.

Sihle is beaming: he thrives on the attention. His gestures become wilder. His arms flap furiously; he jumps up and down, his eyes roll until only the whites are visible and ?perspiration gleams from his brow. 

Suddenly he pauses to catch his breath. He bends, hands on knees, looks up and surveys the people watching him. A toothy grin creases his face. 

"When Sihle goes home on weekends, he goes to church," Potelwa Mhlatyelwa says. "There, he studies the people. When he comes back here on a Monday he behaves like them and acts out all their strange manners."

Mhlatyelwa is a young teacher at the home for mentally disabled children in Hobeni village near Elliotdale in the Eastern Cape, where Sihle is resident. 

"In the church service the people are turning around very fast and singing and dancing and clapping and praising God loudly. Sihle shows us these things, and it makes us laugh so, so much!" Mhlatyelwa exclaims. 

As usual it was Sihle's father, Jam-Jam Batiya, who arrived to drop him off in Hobeni, this Monday morning. 

"What we love about Sihle is that he is not like other mentally disabled children," says the softly spoken, bearded man. "He doesn't just sit at home. If we are going to church, he goes to the cupboard and puts on his best clothes so that he can come with us. I also love that he is proud of himself and he has dignity. When we go to church and I say: 'Okay, put your clothes on now,' he will answer: 'No I cannot.' When I ask why not? Sihle will answer: 'Because these clothes have not been ironed. They must be ironed so that I can look smart.'" 

Batiya bows to kiss his son goodbye, before Sihle bounds into a spacious mud hut, the eating room at Ikhaya Loxolo (Home of Peace). 

Then he says: "You know, I see other 'normal' people in church who have not bothered to put on clean clothes and some who still smell of liquor and I think to myself: Who is mentally disabled here? Sihle or these people?"

"[N]ot different enough"
When Sihle was born, he looked different from Beauty Mbalela's other six children, but "not different enough" to cause her undue concern. "His head, eyes and ears were very small, but we thought he was a tiny person because he was our last-born." She was 37 and gave birth at Madwaleni Hospital in the Oliver Tambo district. Mbalela didn't visit antenatal clinics during her pregnancy, so she hadn't undergone any tests that could have alerted her to anything that could possibly be wrong with her child. 

When she gave birth to Sihle, doctors and nurses told her the boy was healthy and sent her home with her baby on the same day. "Everyone loved Sihle from the day he was born, because he was always smiling and laughing," she recalls. 

But when Sihle turned four he still couldn't walk. "He would drag himself around on his buttocks," his mother says. "And he could only say four words …" 

She decided to take him back to Madwaleni. "The doctor there told me there was something wrong with the bones in Sihle's brain and that he would always be slow in everything." 

Then, she adds, the doctor said her son was suffering from a "strange illness" she'd never heard of before – Down's syndrome. 

According to the children's health website kidshealth.org — on which all information is reviewed and approved by physicians — at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. "In most cases of Down's syndrome a child gets an extra chromosome – a total of 47 – instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with Down's syndrome." 

A relatively common syndrome
Mbalela knew no one who had previously heard of Down's syndrome. And Mama ka Blondie, a village elder and one of the caregivers at Ikhaya Loxolo, where Sihle stays during the week, says: "There's no one in Hobeni like Sihle. What has happened to him is very mysterious to me." 

Yet, study after study has shown that, though Down's syndrome was considered rare in black African populations until 1982, the incidence in black South African babies is as high, and in some circumstances higher, than that occurring in other population groups. According to Down Syndrome South Africa, about one out of 500 live births in the country is a Down's syndrome baby, compared with one in every 1 000 in developed countries, where such pregnancies are mostly detected early during gestation and often terminated. 

Research by Arnold Christianson, from the South African government's National Health Laboratory Service's genetic division, has shown that 65% of Down's syndrome children in black, rural communities in South Africa die before their second birthday — compared with an international life expectancy for others with the syndrome of 55. The fact that many of those with the condition in rural areas don't live to become adults, Christianson says in a study published in the South African Medical Journal in 1997, is one of the reasons so few people in such communities know about Down's syndrome. 

Mike Urban from Stellenbosch University's medicine faculty says heart disease is one of the most common causes of early deaths among those with the condition. "Fifty-five percent of Down's syndrome children are born with heart defects that require surgery. When [it] is unavailable, they don't live for long."

According to the United States government's National Institutes of Health, most people with Down's syndrome have flat nasal bridges, small heads and ears as well as upward-slanting eyes. Studies have also found that they have IQs of around 50 (70 and below is defined as intellectual disability). 

Rural babies often undiagnosed
In rural areas, black Down's syndrome babies are frequently not diagnosed at birth, as in Sihle's case. The South African Medical Journal study showed that in only 16.4% of cases of the black, rural Down's syndrome children studied was such a child diagnosed during a mother's hospital stay for her delivery. 

Down Syndrome South Africa director Vanessa dos Santo says the organisation regularly encounters cases where black, rural children with the condition aren't diagnosed until they attend school, or even later "if they do not go to school". She recently helped a mother who knew her son had an intellectual disability, but only found out he had Down's syndrome when he was 20. 

Like Sihle's mother, most of the mothers in the South African Medical Journal study did not consider their newborns as "looking different" from other babies. In only 7% of the 52 cases studied had parents heard of Down's syndrome prior to the diagnosis of their children. 

The lack of recognition was also true for medical personnel. "It is partly due to the overlap in craniofacial features between Down's syndrome and normal neonates, making the … diagnosis more difficult," Christianson says. The researcher believes, because mothers giving birth in rural government hospitals are usually discharged on the second day after delivery if both are considered well, there is also limited time in which to make a diagnosis. Sihle left the hospital with his mother even earlier: on the same day she gave birth to him. 

Ikhaya Loxolo's director, Alex Gunther, an educational specialist, is not surprised by Sihle's late diagnosis either. "Just about every resident here has never been officially and correctly diagnosed. Mostly the diagnosis that comes from Madwaleni is 'mentally challenged', and that's all," she says. "We have to try to make our own diagnosis, even though we're not medical experts." 

Because Madwaleni is a district hospital, it doesn't employ specialists such as paediatricians or child psychiatrists that could assist with diagnoses. 

The fact that Mbalela was 37 when she gave birth to Sihle played a role in his condition: research has shown that women aged between 35 and 40 have a one in 400 chance of giving birth to a Down's syndrome child compared with a much reduced risk of one in 1 000 for a 30-year-old, according to kidshealth.org. 

A variety of myths 
But in Hobeni, people have their own beliefs associated with the condition. "I think we have children like Sihle because the mothers go to hospitals to get injections to prevent pregnancy when they're already pregnant. The chemicals in those injections then affect the baby inside them," says Mama ka Blondie. Like many in the deeply isolated area, she insists there are also "spiritual causes" of mental disability. "Witches project bad thoughts into babies in the womb. That's how those children get mentally damaged. They send snakes to harm those babies, snakes that no one else can see." 

Mbalela, however, rejects the assertion that her son was bewitched. 

"I refuse to believe this," she spits. "When I was pregnant with Sihle I was loving all the mentally disabled children in my village. I used to play with them and feed them. So I think God decided to give me one of these special children because he knew I would love it with all my heart."

                                                                                                                       Mama ka Blondie 

"Sihle's our happiest, most loving resident," says Gunther, while watching Ikhaya Loxolo's residents playing an evening game of football. "When he finds out that someone else is sad, he will go and try to comfort that person. He will hug them and stroke them."

Sihle gets momentary control of the ball and kicks it with such power that it lands far outside of the bushy playing field. "No, Sihle, not again!" shouts an agitated Mama ka Blondie. She's in her late 40s and is wearing a long floral-patterned dress. "You must play in between the lines we drew for the soccer field, wena. There are rules!" But a few seconds later, when Sihle almost scores an own-goal, Mama ka Blondie? is laughing and shaking her head: "O, Sihle, you, wena! You!"

Then she slips and collapses in a heap in the mud, dress in the air. 

Sihle is in stitches, literally rolling on the ground. "Mama ka Blondie!" he chortles and sits up straight. "When you slip like this and tumble, you're just like us! You're also disabled!" 

Mama ka Blondie's cheek is smeared with mud. But she can't stop smiling at Sihle. There's love in her eyes. 

But, when Sihle leaves Ikhaya Loxolo for the reality of Hobeni at weekends, his parents say, his world changes drastically. In it, there are very few people who see him in the way that Mama ka Blondie does. 

"Some people here say Sihle and other mentally disabled people are curses and proof that Satan has power in this world," his father says. "They see mentally ill people as worthless. And they argue, why must you nurture something which is worth nothing to you?" 

One of Hobeni's sangomas, Zwelisithile Bendlela, explains that when most people in the region see disabled people like Sihle, they shout: "'Hey, you! Stupid!' Or they scream: 'You are not human, you are an animal, like the baboon.'" 

Hobeni's headman, Patrick Fudumele, confesses that he, too, once behaved like this. "When we were growing up, even me too, I was treating mentally disabled people just like that. I am ashamed of that behaviour now."

Disability grant rarely gets to the disabled 
Parents with mentally disabled children receive a disability grant of about R1 200 on their child's behalf. But, Mama ka Blondie says: "The parents generally take the grant money for themselves. That money does not get close to their sick children. The mothers or fathers rarely use it to buy food and clothes for the disabled child. That kid wears rags and is fed scraps, like a dog."

Sihle, though, is fortunate to have sensitive, caring parents who want him to develop to his furthest possible potential. They use half his grant money to pay for him to stay at Ikhaya Loxolo and the other half for costs they incur when he stays with them at weekends. But, says his mom: "Community members think we're crazy for doing it." 

Sihle's father says: "People say we're small-minded ourselves for loving Sihle. They think we're wasting our money on him. They say we should keep him at home and spend the grant money on ourselves, on food and beer. That's what everyone is doing here."

According to Mama ka Blondie, villagers argue that: "Mentally disabled children won't be able to make money and look after us when we get old, so we'll look after them [only] a little bit because they can only look after us a little bit one day." 

She adds quietly, and almost in shame at the people she shares a village with: "Sometimes I think the only reason they keep these kids alive is for the grant money. Some people ask me: 'Are you also mentally disabled because you work with those funny people?' They think I work at Ikhaya Loxolo because I have a mental disability that I am hiding. So they try to put that stigma on me too."

The same attitudes affect Sihle's teacher at the Hobeni home, Potelwa Mhlatyelwa. "People say I've got a meaningless job. They ask: 'What's the point of teaching these people? They're useless. They'll never get jobs.'" 

But, says Mama ka Blondie: "I laugh at such people because, rather than disabling me, these kids enable me to do unimaginable things. I am an old woman, yet I run around there kicking a ball with them. If I did that outside these walls at my age people would have a true reason to call me crazy!"

She's adamant: "That is what people outside these walls will never understand … mentally disabled people make me feel more human, not less human."

                                                                                       Potelwa Mhatyelwa teaches Sihle to write 

Sihle's face is a knot of concentration: his eyes narrowed, his mouth shrunk into a grimace. Mhlatyelwa's morning "school" for Ikhaya Loxolo's residents is under way. 

Sihle's learning how to write an "i". He's puzzled by the dot on top of the straight line. Mhlatyelwa guides his hand, in which he's holding a pencil, to make an "i" in an exercise book. But, every time he's supposed to dot his "i", he stops and moves the pencil to write another straight line. 

Over the past few months Mhlatyelwa has taught Sihle to write an "s" for Sihle." She says proudly: "He can now also say the first four letters of the alphabet in the correct order. I teach him to write one letter at a time. It will take a few weeks more for him to learn to write an i." 

The teacher has also taught him the months of the year, and to count to 20.

When Sihle arrived at Ikhaya Loxolo he couldn't count or hold a pencil. "He was just like a baby," says his father. "He couldn't dress himself and he couldn't keep a place clean. Now he does these things." 

Sihle first went to a "normal" school in Hobeni for three years. But, when he "couldn't write a single letter" after all that time, the teachers wrote a letter to his parents to say he must "leave the school to find another place for slow learners like him", his father recalls. 

Lack of support from government 
But in the Elliotdale district, where the Eastern Cape department of social development estimates 93 610 people live, there isn't a single government home or school for mentally disabled children. As a result, Sihle stayed at home for four years "doing nothing", says his mother. "When we asked the government social workers in Elliotdale where we could send Sihle, they told us: 'There is nowhere.' Then one day, after many years, we heard about Ikhaya Loxolo from our headman so we brought him here." 

But the home receives no government support and, according to Gunther, four applications for state assistance have been rejected. Ikhaya Loxolo is a compound of a few mud huts that Gunther, her husband and a few locals built. Owing to the lack of financial support, it can accommodate only 10 mentally disabled people. Gunther keeps the place going with limited donations and resident fees. 

But, for Sihle's mother, Ikhaya is a "miracle."

"Here my boy can learn, even if it's just a little. Here, he is treated like a human being; he is made to feel normal," she says. 

The local social development department is responsible for the funding of homes for the mentally disabled in the Eastern Cape. 

According to its spokesperson, Gcobani Maswana, the department "partly" funds nine homes in the province. The nearest to Hobeni is in Mthatha — a four-hour drive away. When it rains, public transport doesn't operate in the area because the roads become impassable.

"There are very many mentally disabled people in this district," says headman Fudumele. "I know some families, all of them are mentally handicapped — maybe it's in their genes. Some of these mentally ill people around the villages and towns here run around almost naked. The government officials see them, they know their families are abusing them, but they do nothing to help. All they do is pay out disability grants. That is what they consider their responsibility to be and nothing else." 

But Maswana insists the social development department is "caring". He says he's ordered an investigation into why Ikhaya Loxolo is not being funded, as well as into the conduct of state social workers. 

"If there really are as many mentally disabled people in the Elliotdale district as these people say there are, we should look into providing facilities or expanding the one that is already there [Ikhaya Loxolo]," he says. 

Hobeni's lack of services is by no means unique. A 2006 study in the international, peer-reviewed journal Child: Care, Health and Development, found that only 44% of disabled children in Orange Farm near Johannesburg attended school and barely a quarter of youngsters in need of rehabilitation received it. Less than half of the children entitled to social assistance grants were receiving them. 

The study authors believe their findings are "generalisable to most other disadvantaged areas in South Africa". 

Sihle's mother scoffs: "The lack of support for mentally disabled people makes me very disappointed in this government. A government is meant to care for all sectors of society, the weak and the strong." She adds: "Without well-resourced facilities children like Sihle are not growing, mentally or physically, because they're not doing anything. Their minds are not right. But maybe their hands can be right and they can do something if they are trained." 

Maswana has committed to making the results of his investigation available to the Mail & Guardian by the end of next week. 

"[F]lat minds"
Sihle's mother gazes over myriad turquoise-coloured huts that decorate Hobeni's hilltops, where poverty rules and almost no one has a job. "These mentally disabled people are just rotting away like useless fish in the sun," she says. The nearby sea hisses. Lovely beach resorts, frequented only by tourists, lie just beyond the furthest hill. 

She breathes softly, and says: "I used to daydream of taking care of all these mentally disabled children here, of taking them under my wings. But that dream ended because I had no wings to fly."

The Ikhaya Loxolo choir is practising on a Friday afternoon. The singing is accompanied by animated gestures. The residents sing about the rolling green hills and God's love that exists among them. 

Sihle smiles and dances in polar opposite to his fellow choir members, who begin to laugh; the song descends into chaos. 

Sihle's parents are here to collect their son for the weekend. They smile at the mirth he is causing; they've seen it many times before. 

His father says: "In the village they call my boy 'the one with the flat face'. But we call those who use such words 'the people with the flat minds'. It's them who are too stupid to see what a beautiful, loving person Sihle is. They are too ignorant to look beyond what they see in front of them."