Luyanda Mkhumbose has been alive for 12 years, but she hasn't really lived. All she's ever known is the yard of her home and the single room that she, her mother and two of her siblings share in their rural village in the far north of KwaZulu-Natal.
As light bleeds through cracks in the sun-weathered front door, Simangele Gumede gently wipes away a tendril of spittle spilling out of her daughter's mouth. The girl, whose slight frame dangles in her mother's arms, has been disabled since birth.
She has never been to school and hardly has any friends.
In Emboza - a village set in a developmental no-man's land less than 100km from the border with Mozambique - there is no specialised school to cater for Luyanda's needs.
There is a critical shortage of schools that cater for disabled children in the uMkhanyakude district, about 300km north of Durban, as well as a dearth of teachers to staff them.
It means a bleak future for anyone who is born different.
A disability, physical or mental, in the vast bush expanse of the district is as good as a life sentence of exclusion.
Luyanda was identified in a Section27 report titled "Too Many Children Left Behind". But her plight is not an isolated case.
Not only does the education NGO's report give details of cases just like hers across the country, but a recent parliamentary reply to questions by the DA underscores the situation - showing how thousands remain on waiting lists for schools that cater for disabled children.he response revealed that 9,606 children remained on waiting lists for spaces in the overcrowded classrooms of the country's 63 special schools. More than 3,200 of these children are in the Eastern Cape, and 1,785 in Gauteng. In KwaZulu-Natal, 1,636 are on waiting lists, with the province having just 12 specialised schools.
Luyanda falls into the ranks of thousands of children who won't get an education, lost in a system that cannot find place for them. It is in the uMkhanyakude district, Section27 found, that the situation is arguably the most severe - something Luyanda's mother knows all too well.
Gumede struggled through 48 hours of labour for her first-born daughter. "I don't know the name of the thing that is wrong with her, I just know that something is wrong," she told the Sunday Times. "This is my child. She recognises her brother and her sister, you can see it in her eyes, but she cannot speak. When I took her to the hospital, the doctors said she will not be able to go to school because she can't be left on her own."
For the 12 years since Luyanda was born, Gumede has spent virtually every waking moment caring for her. "I wish that she could have a place to go and learn, a place that would be able to help her because she is special. I don't want her to go far away because I would miss seeing her every day," the mother said.
The family of four, who share a bed in the sparsely decorated room, survive off a disability grant from the state.
Section27 conducted a three-year study centred on what it described as widespread violations of the rights of children with disabilities in the district.
"These violations are so severe that it is clear the dual racial and disability apartheid in South Africa's education system persists. These realities exact a very heavy price on poor black children with disabilities in the uMkhanyakude district, and amount to systemic violations of their constitutional rights to basic education, equality and dignity," the organisation wrote.Interviews were conducted with nearly 100 caregivers of children with disabilities between 2013 and 2015. In late 2015, the researchers visited all three special schools and 11 full-service schools in the district, interviewing principals, teachers and other staff.
"There are only 11 full-service schools in the [uMkhanyakude] district, which were designated as such between 2007 and 2013, and have markedly varying ability to accommodate children with disabilities [who] are scattered throughout the district.
"There are large numbers of children with disabilities in the district who do not enjoy any access to school at all, and may never have done so," the report said.
It's an improvement, yes, considering there were no registered schools for children with disabilities in the district 15 years ago. But it's not enough.
"Any child with an intellectual disability wishing to attain a higher level of qualification than Grade 7, or attain a national senior certificate, simply cannot do so in the uMkhanyakude district," the NGO said.
Another of these "forgotten children" is 19-year-old Sandile Mlambo, who lives in Manguzi, also in the far north of the province. He has never been to school because he is deaf.
While neighbours his age are occupied with thoughts of university and life beyond their teens, he plays with a wire car he crafted. He spends his day with his grandmother, helping her gather palm fronds to be woven into baskets, bound for Durban.
Unlike them, Mlambo will never leave. He was a sickly child who had to make repeated trips by taxi to the district hospital. A well-worn patient card offers little insight into when he was discovered to be deaf.
The words "deaf - no schooling" are scrawled on the cover in the rushed handwriting of an unnamed doctor. His grandmother, Liphenjana Assalinah Hlatshwayo, recalls that when he was approaching school-going age, doctors established that he was hearing-impaired.At the Manguzi district hospital, a social worker guided his mother through the application forms for a special school. But the forms never reached the school; they were apparently discovered in the same office years after the social worker had left for another post.
The family would be turned away from several schools in the area, going as far as Nkandla - 380km away by road - in search of a place for Mlambo to learn.
His grandmother said that he attended one school for a month, but was driven out by children who ostracised him for being deaf and mute.
His stoic plight is mirrored by thousands of other children.
KwaZulu-Natal education department spokesman Muzi Mahlambi admitted there were challenges, but said Section27 had exaggerated the situation.
"We have special schools in that area. We appreciate that everyone wants to see an ideal provision of education. The department is working to redress the actions of the apartheid government. We acknowledge our shortfalls and we know we still face challenges.
"We admit that if we had more than what we have in our kitty we would be able to do more in fast-tracking transformation and redress," he said.With the right care, you can climb every mountain
Chaeli Mycroft is a perfect example of what can happen when disabled children are properly taught and cared for, and have their needs catered to.
Mycroft, 23, who has cerebral palsy and is in wheelchair, matriculated from Reddam House in Cape Town in 2012, and is now studying for a master's degree at the University of Cape Town.
In addition, she has done something that many able-bodied people will never do. In 2015, she became the first female quadriplegic to summit Mount Kilimanjaro.
Adding to her physical achievements, she became the first assisted wheelchair-bound participant to complete back-to-back Comrades marathons.
Her foundation, the Chaeli Campaign, wants to help others to achieve similar feats.
Zelda Mycroft, Chaeli's mother and CEO of the campaign, believes the culture of exclusion for children who are born disabled has become so inculcated in society that it is now standard practice.
In rural areas in particular, parents are hardly aware of the rights their children have in the matter of schooling."It is a sad reality that inclusion is not seen as standard practice, and often parents are not even aware of the rights of their children when it comes to education. Often in disadvantaged communities, where the stature of teachers is respected, parents find it very difficult to stand up for children's rights," she said.
The Chaeli Champaign runs multiple programmes to help children living with disabilities, encouraging a philosophy of inclusion. It assists more than 5,000 children annually. It was founded out of a need to raise funds for Chaeli's own electronic wheelchair.
"The interesting thing about Chaeli is that she has experienced every medium of education. She was with an inclusive day mom and then she went to a special-needs school. At the age of nine she was transferred to a mainstream government school and went on into high school. Later she switched to a private high school," Zelda said.
For her, it is vital that the government does more for disabled children.
"The government's take on children with disabilities is that the onus is on the parent to provide and to push for any kind of education their child may need. If they are to be accommodated in any way, the parent has to provide the means to do this. It is important to ensure the inclusion of all people, not just the historically disadvantaged. If we can see the value, the power and the worth each human being brings to our world, we are richer for it."
wicksj@sundaytimes.co.za..