More than 600 000 children with disabilities in South Africa have never been to school.
Now more than 1 000 caregivers registered under the Afrika Tikkun Empowerment Programme and 4 500 families registered with the Disabled Children’s Action Group are uniting their voices to ask the department of basic education to make education for children with disabilities free, and for schools to be inclusive of such children.
Caregivers also argue that the department places a double burden on them.
Parents have been fighting this war individually, and have decided there is a need to work together to amplify their voices.
Children with disabilities pay school fees and costs that children without disability are not asked to pay. Many parents cannot afford to send their disabled children to school and pay for their transport or accommodation. They are left with no option but to keep them at home, excluding parents from the opportunity to earn an income.
South Africa was one of the first countries to ratify the Convention on the Rights of Persons with Disabilities in 2007. It also signed key international human rights treaties and two African treaties protecting and guaranteeing children’s economic and social rights.
It is important that, as a nation, as individuals and as duty bearers, we take seriously our commitment to provide free basic education for all children. Take a moment in Disability Month to walk a mile in the shoes of these caregivers on their journey towards ensuring children’s education.
Discriminatory fees, expenses
Special schools have prohibitively expensive fees for families living on grants and caregivers who are unemployed.
Take Hilda* and her husband, who are unemployed. Their only source of income is their monthly social grant of R1 690 (R20 280 a year). This is also the school expenses for a year for her son with disability, one of two children: school fees, R5 200; stationery, R255; and transport, R21 500 (calculated at R500 a week for 43 weeks).
Hilda says: “Sometimes he doesn’t go to school for two days a week, maybe because I don’t have the money. Last year I could pay the school fees because I was a domestic worker. Maybe [my employer] gives me R150, sometimes when I come on Sunday R200. But now, since this year, nothing. I didn’t work.”
One of the biggest expenses is transport. It is not just the expense — it is the amount of time spent by the child on the road, and their vulnerability. Some mothers have no choice but to escort their child to and from school, waiting for them through the hours of the day.
Nompi’s* daughter, Princess*, has cerebral palsy and epilepsy. She needs nappies, and cannot chew — so she needs a soft diet.
“I wake up at four in the morning, the driver fetches her at 5am,” says Nompi. “She is away from 5am until 4.30 in the afternoon. School starts at 8am. It is a three-hour drive or more because there are many children [to collect along the way]. Princess finishes school at 12pm, but she gets home between 4pm and 4.30pm, sometimes 6pm. The driver fetches her at 12pm, and she stays in the car until the driver has dropped all the children off. That’s bad, but at least she is going to school.”
During the time she is being transported, Princess gets nothing to eat and does not take her epilepsy medication. The school also refuses to feed her on her soft diet. She is eight years old, and weighs 15kg.
Violence, abuse and neglect
Faith* is a single mother of three, and cannot work because of her son, Prince*, needs constant care and she has difficulties in finding an appropriate school. Her journey has been a long-suffering one, peppered with severe abuses of her son, who has muscular dystrophy and autism. It shows the extreme vulnerability of children with physical and intellectual disabilities. In Johannesburg, she faced extreme prejudice because of her ethnicity (Xhosa). The teacher would almost exclusively refer to her son as a “dog”.
“[The teacher] told me that I must ‘look for a chain for your dog — because he is moving all over the place’,” says Faith. “I couldn’t understand her and just kept on crying. I realised that Prince wasn’t the problem, it was me. Because I am Xhosa. After that I left the school.”
After leaving Johannesburg, Faith started looking for schools in the Eastern Cape, and was eventually successful — but it wasn’t long before Prince’s vulnerability was exploited again.
“When I came to fetch him [in December] they didn’t know where he was. When they finally found him, he was naked and his clothes were hanging all over a tree. After that I took him out of that school because he wasn’t safe there.”
She then brought him back to Johannesburg, to a school in Orange Farm.
“On my day off I wanted to see Prince. The owner of the school wasn’t there and no one could tell me where my child was. When I finally got an address, I found him in an RDP house with no fence or walls. When I entered the house I saw a boy sitting on the floor. He was holding Prince with a doek around his neck so that he couldn’t move. The place was small and very smelly. There was poo everywhere and only a little food on the table.”
She took Prince back to a school in the Eastern Cape that was close to her mother, so she could check on him regularly. But on her next visit, she found her son with signs that he may have been sexually abused.
“When I went into the dormitory, another boy was there and he was hurt, even his ears, there were sores all over his body. And he said to me: ‘Mama Prince, Mama Prince, Prince didn’t want to have sex. He was pushing the other boys not to have sex with him’ .”
She took her son to a doctor for an examination after she found boils and an infection on his buttocks, but did not pursue the matter further.
Stress and depression
Rosa* in Diepsloot must rely on stimulation centres in her area, as there are no schools for children with cerebral palsy nearby.
“Those who look after children are only volunteers without proper experience. There is no proper food because they rely on donations from other centres or organisations. If you are looking for a space for your child you must be on the waiting list for at least two to three years.”
Rosa is one of many parents for whom waiting lists have meant many, many years, during which their children do not receive any education.
An overlooked consequence of the problems faced by caregivers and parents is how they cope with the stress and level of emotional care and strength required of them. There are high levels of stress, depression, anger and mental illness among caregivers. They are in desperate need of support, but, because of the stigma associated with disability and the lack of general understanding about disability, caregivers are often abandoned by partners and family.
Hilda testifies: “It was too much for me alone with two disabled children. Sometimes they [Afrika Tikkun] called me to the office to give me something [food parcels]. Here I meet other parents, I share my story. I told them: ‘I am sick, I have depression, I have high blood [pressure]. Every two weeks I go to Baragwanath hospital for oxygen. My husband, he goes to KZN [KwaZulu-Natal], he wants a job. Now I don’t know what will happen with my child.’
“My family didn’t give me support. If my sister comes to my house and sees my child, she is like: ‘Ey! Your child is stupid man! Why doesn’t he understand at school?’ I say: ‘Sister, I don’t know what is happening with my child. Even me, I don’t know’.”
Nompi is even more frank: “I am always angry, always angry.”
She admits to beating her daughter, forgetting to feed her and not having the emotional capacity to cope with her daughter’s disability.
As parents and caregivers of children with disabilities, Afrika Tikkun and the Disabled Children’s Action Group want children with disabilities to enjoy their right to free, inclusive education. They are advocating for an inclusive education system to make it possible for the more than 600 000 children with disabilities in South Africa to realise their right to a basic education.
They are asking the department to ensure that:
- Special schools are non-fee schools;
- Mainstream schools include children with disabilities; and
- Special schools have accommodation is reasonable and safe.
Catherine Sofianos works for Afrika Tikkun, which aims to make a
difference by uplifting young people in underprivileged areas