Sunday Times

POWER OF PURPLE

It’s the colour of acceptance for disabled kids

- By JEFF WICKS and TALIA ALIBER

● Desley Ngomane’s childhood was spent confined to her cramped home in Orange Farm, Gauteng, where she was shut away by a mother who lived in fear of the community because her daughter was disabled.

The 17-year-old, who has cerebral palsy, lived her “cursed” life in secret.

“People would say horrible things — that she was cursed and had been bewitched. They didn’t understand what was wrong with her and would run away from her,” said her mother, Elina Chauque.

But a life of shame and fear for Ngomane and many other disabled children in the Gauteng township changed with a stroke of purple paint.

In an initiative driven by NGO Afrika Tikkun to challenge the social stigma of mental and physical disabiliti­es, the homes of disabled children in the township are painted bright purple, giving their parents a chance to alter the perception­s of a community that has long held them at arm’s length.

Three years into the campaign, 75 homes in the township have been painted purple.

For Chauque and her daughter, a mural of whom adorns the front wall of their home, the mindset of their neighbours has begun to shift.

“It was hard at first, the people around me didn’t understand what was wrong with her. Also, because she can’t control the way she salivates, people were scared of her and would run away when she came towards them,” she said.

“Since we made the house purple, people often mistake it for a crèche so they come and ask me about it and I can tell them about Desley.”

According to 2016 research by the African Child Policy Forum, disabled children are among the most neglected groups in society, with most facing “enormous economic, political and social barriers”.

“Many of them do not have access to the most basic needs, such as health services and education, and experience multiple deprivatio­ns even within their family,” says the report.

Gloria Makhalima lives with her mentally-disabled son, Khaya, and knows how it feels to be excluded from her community.

Khaya, 41, suffered brain damage in a traumatic birth.

“People would call him names in the street. They’d call him crazy and he would come home and ask me what that means. It made my heart sore,” said Makhalima, tears welling in her eyes.

Last year she painted her house purple, making it a beacon for acceptance.

“All Khaya knows is love, he is my boy. I just want him to be accepted and this paint helps me start the conversati­on and tell people about my son,” Makhalima said.

Afrika Tikkun’s Dr Jean Elphick said the organisati­on had found that children with disabiliti­es faced myriad problems.

“Six out of 10 children were staying at home and not going to school,” she told the Sunday Times.

“Discrimina­tion and prejudice were common, and, in many cases, men would abandon the mothers and children.”

The women of Orange Farm formed an empowermen­t group called Sidinga Uthando, which means “we need love”.

The caregivers in the group identified a need for social change and inclusion, and painting houses purple gave parents a way to make their neighbours and community more conscious of the issue.

“We paint the children’s homes and write their names and the type of disability on the wall so if people ask what is happening there, the parents have a chance to explain and teach their neighbours about the children,” said Elphick.

Shannon O’Keefe, of disability advocacy group the Sunshine Associatio­n, said the ostracism of children with disabiliti­es is common.

“There is still the thought that the mother and even the child with disabiliti­es has been cursed, or there has been witchcraft because of difference­s or disputes within the family. The mother is often blamed as if she did something wrong,” she said.

O’Keefe said that education, through initiative­s like the purple paint campaign, is desperatel­y needed.

“Communitie­s should start the dialogue about disability because knowledge is power, and we will be able to reduce the stigma through accepting and supporting persons with disabiliti­es without being judgmental.”

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 ?? Pictures: Alon Skuy ?? After years of hiding her daughter from community unkindness, Desley Ngomane’s mom Elina Chauque made their home in Orange Farm, Johannesbu­rg, a purple landmark.
Pictures: Alon Skuy After years of hiding her daughter from community unkindness, Desley Ngomane’s mom Elina Chauque made their home in Orange Farm, Johannesbu­rg, a purple landmark.
 ??  ?? ‘Since we made the house purple, people … come and ask me about it and I can tell them about Desley,’ says Elina Chauque.
‘Since we made the house purple, people … come and ask me about it and I can tell them about Desley,’ says Elina Chauque.
 ??  ?? Above and top, Gloria Makhalima and her son Khaya, who suffered brain damage during birth. ‘All Khaya knows is love. He is my boy,’ says his mother.
Above and top, Gloria Makhalima and her son Khaya, who suffered brain damage during birth. ‘All Khaya knows is love. He is my boy,’ says his mother.

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