News / Africa

Down Syndrome Children Face Discrimination in South Africa

  • Sihle Batyia, at the Ikhaya Loxolo home in Hobeni in South Africa’s Eastern Cape province (VOA/Taylor)
  • Community elder and a caregiver at the home, Mama ka Blondie, often has the responsibility of supervising Sihle (VOA. D Taylor)
  • Sihle with his favorite toy – a battery operated toy space gun (VOA/ D. Taylor)
  • Sihle fires his favorite toy constantly – much to the irritation of his fellow patients. (VOA/ D. Taylor)
  • Sihle takes his parents, Jam-Jam [left] and Beauty, on a tour of the farm on which he works (VOA/ D. Taylor)
  • Sihle is justifiably proud of his agricultural achievements (VOA/ D. Taylor)
  • Sihle is justifiably proud of his agricultural achievements (VOA/ D. Taylor)
  • Sihle says he “loves” being at Ikhaya Loxolo and never wants to leave the home (VOA/ D. Taylor)
  • A caregiver helps Sihle to write during a morning school lesson at Ikhaya Loxolo (VOA/ D. Taylor)
  • For the first time in his life, Sihle feels he has “real friends” at the home (VOA/ D. Taylor)
  • For the first time in his life, Sihle feels he has “real friends” at the home (VOA/ D. Taylor)
  • Sihle pages through a coloring-in book (VOA/ D. Taylor)
  • Sihle is very fond of helping to feed the home’s animals (VOA/ D. Taylor)
  • Sihle plays a card game with other residents and as usual, he’s full of jokes (VOA/ D. Taylor)
South African Boy with Down Syndrome Triumphs Over Prejudice
Darren Taylor

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.  

  • Sihle Batyia, at the Ikhaya Loxolo home in Hobeni in South Africa’s Eastern Cape province (VOA/Taylor)
  • Community elder and a caregiver at the home, Mama ka Blondie, often has the responsibility of supervising Sihle (VOA. D Taylor)
  • Sihle with his favorite toy – a battery operated toy space gun (VOA/ D. Taylor)
  • Sihle fires his favorite toy constantly – much to the irritation of his fellow patients. (VOA/ D. Taylor)
  • Sihle takes his parents, Jam-Jam [left] and Beauty, on a tour of the farm on which he works (VOA/ D. Taylor)
  • Sihle is justifiably proud of his agricultural achievements (VOA/ D. Taylor)
  • Sihle is justifiably proud of his agricultural achievements (VOA/ D. Taylor)
  • Sihle says he “loves” being at Ikhaya Loxolo and never wants to leave the home (VOA/ D. Taylor)
  • A caregiver helps Sihle to write during a morning school lesson at Ikhaya Loxolo (VOA/ D. Taylor)
  • For the first time in his life, Sihle feels he has “real friends” at the home (VOA/ D. Taylor)
  • For the first time in his life, Sihle feels he has “real friends” at the home (VOA/ D. Taylor)
  • Sihle pages through a coloring-in book (VOA/ D. Taylor)
  • Sihle is very fond of helping to feed the home’s animals (VOA/ D. Taylor)
  • Sihle plays a card game with other residents and as usual, he’s full of jokes (VOA/ D. Taylor)

 
‘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
Listen to Taylor report on one child's struggle with Down Syndromei
|| 0:00:00
...    
🔇
X

You May Like

Obama: Alaskans Feel Signs of Climate Change

They're seeing bigger storm surges as sea ice melts, more wildfires, erosion of glaciers, shorelines More

Katrina Brought Enduring Changes to New Orleans

The city’s recovery is the result of the people and culture the city is famous for, as well as newcomers and start-up industries More

Magical Photo Slides Show Native Americans in Late 1800s

Walter McClintock spent 20 years photographing the Blackfoot Indians and their vanishing culture at the dawn of the modern age More

Featured Videos

Your JavaScript is turned off or you have an old version of Adobe's Flash Player. Get the latest Flash player.
Colombians Flee Venezuela as Border Crisis Escalatesi
X
August 27, 2015 2:08 AM
Hundreds of Colombians have fled Venezuela since last week, amid an escalating border crisis between the two countries. Last week, Venezuelan President Nicolas Maduro ordered the closure of a key border crossing after smugglers injured three Venezuelan soldiers and a civilian. The president also ordered the deportation of Colombians who are in Venezuela illegally. Zlatica Hoke reports.
Video

Video Colombians Flee Venezuela as Border Crisis Escalates

Hundreds of Colombians have fled Venezuela since last week, amid an escalating border crisis between the two countries. Last week, Venezuelan President Nicolas Maduro ordered the closure of a key border crossing after smugglers injured three Venezuelan soldiers and a civilian. The president also ordered the deportation of Colombians who are in Venezuela illegally. Zlatica Hoke reports.
Video

Video Is China's Economic Data Accurate?

Some investors say China's wild stock market gyrations have been made worse by worries about the reliability of that nation's economic data. And some critics say the reports can mislead investors by painting an unrealistically-strong picture of the economy. A key China scholar says Beijing is not fudging ((manipulating)) the numbers, but that the economy is evolving quickly from smoke-stack industries to services, and the ways of tracking new economic activity are falling behind the change. V
Video

Video Next to Iran, Climate at Forefront of Obama Agenda

President Barack Obama this week announced new initiatives aimed at making it easier for Americans to access renewable energy sources such as solar and wind. Obama is not slowing down when it comes to pushing through climate change measures, an issue he says is the greatest threat to the country’s national security. VOA correspondent Aru Pande has more from the White House.
Video

Video Shipping Containers Provide Experimental Housing

Housing prices around the San Francisco Bay area are out of reach for many people, so some young entrepreneurs, artists and tech industry workers are creating their own houses using converted shipping containers. But as VOA's Mike O’Sullivan reports from Oakland, the effort requires ingenuity and dealing with restrictive local laws.
Video

Video Arctic Draws International Competition for Oil

A new geopolitical “Great Game” is underway in earth’s northernmost region, the Arctic, where Russia has claimed a large area for resource development and President Barack Obama recently approved Shell Oil Company’s test-drilling project in an area under U.S. control. Greg Flakus reports.
Video

Video Philippine Maritime Police: Chinese Fishermen a Threat to Country’s Security

China and the Philippines both claim maritime rights in the South China Sea.  That includes the right to fish in those waters. Jason Strother reports on how the Philippines is catching Chinese nationals it says are illegal poachers. He has the story from Palawan province.
Video

Video Technique May Eliminate Drill-and-Fill Dental Care

Many people dread visiting dentists because they're afraid of drills. Now, however, a technology developed by a British firm promises to eliminate the need for mechanical cleaning of dental cavities by speeding a natural process of tooth repair. VOA’s George Putic reports.
Video

Video China's Spratly Island Building Said to Light Up the Night 'Like A City'

Southeast Asian countries claim China has illegally seized territory in the Spratly islands. It is especially a concern for a Philippine mayor who says Beijing is occupying parts of his municipality. Jason Strother reports from the capital of Palawan province, Puerto Princesa.
Video

Video Ages-old Ice Reveals Secrets of Climate Change

Ice caps don't just exist at the world's poles. There are also tropical ice caps, and the largest sits atop the Peruvian Andes - but it is melting, quickly, and may be gone within the next 20 years. George Putic reports scientists are now rushing to take samples to get at the valuable information about climate change locked in the ice.
Video

Video French Experiment in Integrating Roma Under Threat

Plans to destroy France’s oldest slum have sparked an outcry on the part of its Roma residents. As Lisa Bryant reports from the Paris suburb of La Courneuve, rights groups argue the community is a fledgling experiment on integrating Roma who are often outcasts in many parts of Europe.
Video

Video Kenyans Turn to Agriculture for Business

Each year Kenyan universities continue to churn out graduates for the job market despite the already existing high rate of unemployment among youth in the country. Some of these young men and women have realized that agriculture can be as rewarding as any other business or job, and they are resorting to agribusiness in large numbers as a way of tackling unemployment. Rael Ombuor reports for VOA.
Video

Video First Women Graduate Elite Army Ranger School

Two women are making history for the U.S. Army by proving they are among the toughest of the tough. VOA's Carla Babb reports from Fort Benning, Georgia as 94 men and those two women rise as graduates of the difficult Ranger school.

VOA Blogs