No longer out of sight or out of mind

In an almost forgotten corner of Zimbabwe the BaTonga people try to scratch a living from the dessicated earth of the Binga district. And they still talk with bitterness of the creation of the vast Kariba dam 56 years ago, a cataclysmic event that saw them forcibly removed from the rich alluvial soil along the banks of the Zambezi, and dumped in the arid uplands. The region has seen little development since, 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 then lashes out at her again. The strain shows on Muleya’s face and gives some idea of the difficulty she must face trying to work the fields while keeping an eye on her child all day. “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 despite 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 and 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 spina bifida, and his tiny back bears the massive scar of a surgical operation to try to correct this. “He went for treatment at the Karanda mission hospital in Mount Darwin and they did an operation,” explains Simajiki. “But they don’t think he will ever be able to walk so they gave him this wheelchair.”

Coping strategies
It’s a hard fact for this young mother to accept, but one she is learning to deal with. 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 teaches 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, but their battles go beyond providing necessities for their children—they also face stigma and discrimination in their communities. Many women are physically abused or even 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 on the family. The result is that these children are often hidden away and do not get the treatment and care they need, because the family’s shame is too great.

Ntengwe Trust, an Oxfam partner organisation, is actively working to break down this stigma and educate the community about the rights of children. The Drop In Centre runs regular training courses for parents on providing stimulation and care and helping their children with independent living.

“The problem is a cultural one,” says Innocent Isaac of Ntengwe for Community Development. “In the olden 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 act as a support group for each other.” 

Martha Zulu, project officer for Ntengwe, says that while 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”. But medicine and transport to hospital is not free and is often out of reach for the poorest mothers.

It is for life
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? I don’t even have money to buy her cotton wool.”

Ideally, No Matter should go to a special school for blind children, says Zulu. But the fees cost $400 a term and that is simply out of reach for her mother.

Muleya hardly engages with the cash economy at all, living almost entirely by selling vegetables and her labour to get food. “I grow chomoriya (a green leafy vegetable) and dry it, and then barter it for maize. I also plough other people’s fields for them and then they give me food.” She looks perplexed when we ask how much money she earns each month. “Sometimes I can only see one dollar in a whole year.” Luxuries like sugar and tea are unheard of: “I pick wild fruits like busika [tamarind] and mabuyu [baobab] to flavour the sour porridge.”

Simajiki says that while she now accepts her son “I’m not happy, because my child has a disability and I worry about what will happen to him when I am gone,” says Simajiki. “But I think he has improved over the past year, and the workshops have encouraged me not to lose hope for my child. I want him to go to school or learn a skill like sewing, so he can support himself in future.”

The children in Binga usually only complete grade seven because the nearest high schools are very far away. “We plan to expand the Drop In Centre to include a vocational training unit, so we can provide young people with skills in carpentry, computers, sewing and housekeeping,” explains Juliana Muskwe of Ntengwe. “We want to teach them skills they can use to set up their own businesses. Ntengwe’s policy is to mainstream children with disabilities in all our programmes so they will be learning side by side with other children and have an good opportunity to succeed.”

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