Down Syndrome Children Face Discrimination in South Africa

HOBENI, SOUTH AFRICA — 
This is Part Three of a five-part series on the mentally disabled in South Africa Continue to Parts: 1 / 2 / 3 / 4 / 5
A tremulous voice bellows and echoes through the cavernous mud building, pleading, “Why do you look for the living among the dead?”

The residents of Ikhaya Loxolo, ‘Home of Peace,’ are silent, gathered in the gloom around an old transistor, listening to a Sunday morning religious broadcast crackling down the line from a city 300 miles away.

Umhlobo we Nene is the Xhosa radio station’s name, ‘Your True Friend.’ It is one of the few luxuries available to people in Hobeni – a district in South Africa’s Eastern Cape region where electricity, clean water, tarred roads, good healthcare and jobs are fantasies.

Most people here survive on meager government anti-poverty grants. Alcoholism and HIV are rife. Child deaths from everyday diseases like diarrhea are common.

The members of the huddled group are dressed for a Bavarian winter, even though the day is warm. They’re swaddled under puffy padded jackets emblazoned with the names of German soccer teams like S.V. Hamburg and Bayer Leverkusen. Some look as if they’re fresh from the factory floor, covered as they are in tan and blue overalls bearing the badges of Volkswagen, Audi and Daimler.

The clothes arrive at the home every year, donated by the good burghers of Germany.

“Rise! Prepare for life!” shrieks the man on the radio.

But a restless Sihle Batyia is steadying himself for another kind of resurrection. The stocky 12 year old boy with the dark but sparkly eyes flashes a grin of protruding pearlescent incisors. He grips his favorite toy in hands still sticky from the bread dough he helped the cook knead ten or so minutes ago.

“Oh, God help us, Sihle has his space gun,” says an older female resident, wincing.
The boy gives her another toothy smile. He cackles gutturally; spittle flies from his mouth. He points the silver plastic weapon at the woman and fires. Distorted waves of electric noise and spark drown the radio broadcast.

Church is over.

South African Boy with Downs Syndrome Triumphs Over Prejudice

‘He was different…’

Beauty Mbalela was 37 when she gave birth to Sihle. He was her ninth child.

As with her other children, Beauty never visited a hospital for medical checkups when she was pregnant. “The first time I went to the clinic was when I had to give birth,” she said. “The hospital here is very far away.”

As Sihle entered the world, he wailed like all Beauty’s other babies had. But he was “different,” she said. “Sihle did not look like the others when he was born. His head was very small. His eyes and ears were very small. Sihle looked very strange to me.”

Beauty said the doctor who delivered her last-born son “disappeared” seconds after the birth... And the nurses who remained assured her there was “nothing wrong” with Sihle and that he was “normal.”

The next day she took her baby home, motherly love blurring his initial “strange” appearance and melting it into insignificance, brightening it to beautiful.

But Sihle’s early years were marred by developmental problems. “When he was supposed to crawl, he could not. He dragged himself on the ground, on his buttocks,” his mother remembered.

The boy battled to walk; he couldn’t talk at all. “He just made sounds like grunting and he did not play like other children,” said Beauty.

Nevertheless, when he turned six, Sihle’s parents enrolled him in the local school. They realized their son was “slow” but they were determined that he’d get an education, however limited.

However, after three years of schooling, Sihle “could not write a single letter. He could hardly hold a pencil,” said his father, Jam-Jam Batyia. “The teachers wrote a letter to us to say Sihle must leave school to find somewhere else that teaches ‘slow learners’ like him.”

But there were no such places in the Hobeni district. Here, as in other isolated parts of South Africa, special treatment for the mentally ill and for people with intellectual disabilities is usually non-existent.

Dehumanizing experience

Beauty and Jam-Jam were forced to keep Sihle at home. It was a bitter, painful experience... because while they loved their damaged son with all their hearts, others in the community did not.

“They started calling him ‘the boy with the flat face.’ Because you know people who are sick like him usually have faces that look a bit squashed,” said Jam-Jam. Then the father looked down and said, “They tried to make him not human. And the more they did this, the less human they themselves became. But they were too ignorant to realize this…”

Beauty’s hands shook when she recalled that some people in the village had suggested that Sihle should be “thrown away.”

Jam-Jam said, “Other people said we’re small-minded for loving Sihle. They said we’re wasting our money on him. They said we should keep him at home and spend his disability grant money on ourselves, on food and beer.”

Beauty added, “Some people spat at him and laughed at him… They couldn’t see the love inside him, like we could.” Instead, she said, they labeled Sihle an “evil spirit” and insisted that his “uselessness” and “madness” was proof that his family had wronged someone and so had been “cursed” by witches.

“We knew that this was not so,” Beauty maintained. “Sihle was born mentally disabled. I refuse to believe that he was bewitched. Our culture says this but I reject this part of our culture.”

Sihle was 10 years old when his parents were finally able to put a name to his condition. “One of the workers from Ikhaya Loxolo heard about us and visited us. Then we brought Sihle here. That is when we found out he has Down Syndrome,” said Beauty.

‘Untreatable’

Medical science says a chromosomal disorder causes Down Syndrome and that each case is different. People with it sometimes have almond-shaped eyes, small, flat noses and small mouths and ears, and round, flattened faces. They generally have short bodies and limbs.

Those who have the syndrome often aren’t able to learn properly as they have low intellect.

Down Syndrome isn’t often reported among South Africa’s black population groups, especially those who are poor and live in isolated areas.

“These people aren’t diagnosed, because they don’t visit hospitals regularly; they have no medical records,” said Alex Gunther, a highly trained therapist specializing in caring for and educating people with mental illnesses and director of Ikhaya Loxolo.

She added, “Down Syndrome is also not a recognized medical condition among these people. People with it are said to be cursed by witches or evil spirits. So they are seen as untreatable and useless.”

So, in places like Hobeni, some people with intellectual disabilities like Sihle are neglected, left to wander the streets in rags; others are chained, tied up and locked away because they’re considered a disgrace and a great shame to their families, said Gunther.

Yet, she emphasized, people with Down Syndrome are capable of being “very productive” members of society. “They can learn to do many things that other people can do. They can learn to talk and to work in certain jobs; I’ve seen them create amazing handcrafts and art,” said Gunther. “Also, if they’re treated with respect and care they are amazingly loving and happy people.”

The farmer

At Ikhaya Loxolo Sihle has learned to write his name and to count to 20, and he now knows most of the alphabet. He’s learned many songs. He sings with gusto.

But, in an interview with VOA, Sihle was adamant that what he “loves most” about being at the home is not “the learning part” but the fact that he gets to eat “chicken and meat.” He then smacked his lips dramatically.

Sihle is also immensely proud of his farming talent. He’s in charge of a section of the home’s farm where he plants and harvests vegetables. But when asked if he enjoys farming, he barks hoarsely, “No way! It makes me tired!”

He added, though, that he likes being on the farm because it allows him to spend time with Ikhaya Loxolo’s farmer and maintenance man, Patekile Mofeti. “My favorite job is to help Patekile to feed the rabbits and the pigs. The pigs are my favorite animals… They are very naughty and they like mud. I also like mud,” Sihle said, laughing.

He can now wash and dress himself; two years ago he couldn’t.

“Sihle has come a long way but he is still Down Syndrome and only 12 years old so there is still much work to be done with him as regards his behavior,” said Gunther. “Like most mentally disabled people he sometimes doesn’t know what is right and what is wrong. So he would like stand in front of a girl and play with his private parts, just for example, where you have to step in and say, ‘No, that’s not done; you can’t do that you know.’”

The joker

Gunther said Sihle’s at times mischievous, disruptive, cheeky, naughty and crass… but she exclaimed, “Show me a 12 year old boy who is not these things!”

She acknowledged that Sihle is “no angel” and said he’s regarded as Ikhaya Loxolo’s resident “joker.”

At lunch during VOA’s recent visit at the home, while watching the women serving the food, Sihle made rude comments about their body parts. When therapists admonished him, he just laughed.

Potelwa Mhlatyelwa [23] is Sihle’s teacher and said she’s able to talk for “days” about her pupil’s exploits. She described him as “an actor of note.”

“When Sihle sometimes goes home on weekends he goes to church. There he studies the people. When he comes back here on a Monday he behaves like them and acts out all their strange manners,” said a smiling Mhlatyelwa. “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!”

For Gunther it’s Sihle’s “natural love” that “outshines” his other characteristics. “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,” she said.

Blessing from God

Beauty said many people down the years have asked her, “If you don’t believe that Sihle has been cursed then why was he born with Down Syndrome?”

To that question, she said, she always has the same answer: “It was a blessing from God.”

The mother said she explains to people, “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. That’s why He gave me Sihle. It’s a blessing, not a curse.”

Her husband added, “Some people say Sihle and other mentally ill people are curses and proof that Satan has power in this world. We say people like Sihle are proof that God can make all shapes of people.”

Jam-Jam emphasized that when he now hears people insulting his son by calling him ‘the boy with the flat face,’ it’s no longer painful to him.

“To such people I say, ‘Yes, he has a flat face but you have a flat mind because you 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,” he said.

Beauty maintained she’s most proud of Sihle “because he has dignity. When we go to church and he chooses his clothes 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.’”

Jam-Jam interjected, “Then I see other normal people in church who have not bothered to put on clean clothes and some who smell of liquor and I think to myself, ‘Is Sihle the one who is mentally disabled here?’”

This is a long distance call

A dry wind sweeps across a desert and it curls into the circle of birth. Dead sand falls on children and mothers and fathers and the automatic earth… So Sihle learns from his latest listen to Ikhaya Loxolo’s battered communal radio.

“These are the days of miracle and wonder,” sings Paul Simon, and the staccato drums, heavy bass and accordion romp of his 1980s hit, ‘Boy in the Bubble,’ bleeds into the home’s eating hall.

Sihle closes his eyes and nods along to the music.

This is the long distance call
The way the camera follows us in slo-mo
The way we look to us all
The way we look to a distant constellation
That's dying in a corner of the sky
These are the days of miracle and wonder
And don't cry baby, don't cry
Don't cry.

“Don’t cry!” shouts Sihle. “Don’t cry!”

Then he aims his space gun at a mud wall.

“Follow me in slo-mo, slo-mo!” he shouts, and pulls the trigger.

Listen to Taylor report on one child's struggle with Down Syndrome