Giving hope to children with disabilities
In an almost forgotten corner of Zimbabwe, the BaTonga people try to scratch a living from the dessicated earth of the Binga district.
They still talk with bitterness of the creation of the Kariba Dam 56 years ago, as a result of which they were forcibly removed from the rich alluvial soil along the banks of the Zambezi and dumped in the arid uplands.
The region has experienced little development and the chronic poverty of the people plays itself out in the health of mothers and their children, many of who are born with disabilities that might be prevented or easily treated in more affluent societies.
Martha Muleya is 30, but looks at least two decades older. Even in an area where most people are poor, she is markedly impoverished. As she talks she keeps one hand on her daughter, No Matter (11), trying to keep her quiet and prevent her from wandering off.
The child constantly shrieks, runs her hands over her mother’s face and lashes out at her. The strain shows on Muleya’s face. “My child is blind, epileptic and mentally challenged,” she explains.
“She seemed alright when she was born, but when she started to sit she began to have fits. She also went blind when she was about six months old. I took her to the hospital and they gave her medication, but there was no improvement.”
The name she has given her child expresses the hope that she would be accepted in spite of her condition. Sadly, this has not been the case.
“I got divorced from my husband because he wouldn’t accept No Matter. I don’t get any support from my family so I can’t get money for medicine or send her to school. It is difficult for me to take care of her, because she is not stable so I have to watch her all the time. When she is sick, I have to abandon my work and look after her. The other children don’t understand and get frightened when she has fits.”
At the Ntengwe for Community Development Trust Drop In Centre, Tracy Simajiki (22) wheels her two-year- old son Lionel up the dusty path in a bright pink wheelchair. He was born with macrocephaly and spinabifida.
“He went for treatment at the Karanda mission hospital in Mount Darwin and they operated,” explains Simajiki. “But they don’t think he will ever be able to walk, so they gave him this wheelchair.”
She is just one of a group of mothers of children with disabilities who attend training courses at the Drop In Centre, which aims to equip parents with coping strategies and teach them how to care for their children.
All the mothers who come to the centre live below the poverty line, and most survive by subsistence farming. They also face stigma and discrimination in their communities.
Many women are physically abused or have even been divorced by their husbands, who blame them for giving birth to a child with a disability. Their in-laws often shun them and claim they are bringing bad luck to the family.
The result is that these children are often hidden away and do not get the treatment and care they need. Ntengwe Trust, an Oxfam partner organisation, is working to break down this stigma and educate the community about the rights of children. “The problem is a cultural one,” says Innocent Isaac of Ntengwe for Community Development.
“In the old days, children born with disabilities—and even twins—were taken to a gorge and left there to die. The result is that even now, people hide these children away and don’t take proper care of them. We focus on educating them about the fact that these children have human rights and bring the mothers together so they support each other.”
Martha Zulu, the project officer for Ntengwe, says that alhough epilepsy is a common problem in the area, “people often don’t take the children to hospital because they believe it is caused by witchcraft, so they don’t get medication”.
Medicine and transport to hospital is often out of reach for the poorest mothers. Since joining the support group, Muleya says she feels less isolated and ashamed, and has learned to take better care of No Matter.
“But I’m worried that her condition is not improving and it is for life. What will happen when she gets older and starts her periods? How will I teach her to look after herself?”
Ideally, No Matter should go to a special school for blind children, says Zulu. But it costs $400 a term and is simply impossible for her mother.
Simajiki says that although she now accepts her son, “I’m not happy. I worry about what will happen to him when I am gone. But I think he has improved over the past year, and the workshops have encouraged me not to lose hope.I want him to go to school or learn a skill like sewing so he can support himself in future.”