HARARE, Zimbabwe – When Shupikai Sanda heard that her newborn daughter had hydrocephalus, her world started to crumble. The news of the condition, a buildup of fluid in the skull that can cause brain damage, was sure to ruin her marriage. Her husband blamed her for their daughter’s disability.
“My husband shunned our daughter for being disabled, never tried to provide for her and even refused to be involved when I wanted to acquire a birth certificate for her,” says Sanda, 46.
Her experience is not unique. In Zimbabwe, giving birth to a disabled child can be grounds for a divorce – mothers of disabled children are often left to deal with the challenges and costs of raising their children alone.
Margaret Muyembe’s daughter Nyengeterai has cerebral palsy. As a baby, she was unable to sit or crawl and now, aged 20, she still can’t walk. Muyembe, 46, says her mother-in-law blamed Muyembe’s family for her daughter’s condition. “[She] believed it was a curse or punishment for evildoing from my parents’ side,” says Muyembe.
“There is no acceptance of children with disabilities by their families, in particular fathers and paternal relatives,” says Rejoice Timire, a director of Zimbabwe’s Disabled Women Support Organization. “That leaves the mother the only caregiver to the disabled child.” With their caregiving responsibilities taking up most of their time and energy, mothers of disabled children often cannot work, making it even harder to provide for their families, Timire says.
But Sanda and Muyembe, who both live in Dzivarasekwa, a suburb in northwest Harare, have found a place where they no longer feel alone. At a community center run by the Batsiranai Craft Project, 24 mothers of severely disabled children are trained to design and make gift cards and sew dolls, aprons and hats. Some they sell at local book or craft fairs, the rest they sell overseas with the help of nonprofit partners abroad, in places such as the U.S., the U.K., Australia and South Africa.
The aim of Batsiranai (which means “help each other” in the Shona language) is to allow local mothers to work near home and make the money they need to raise their disabled children.
“Batsiranai helped me come to terms with my child’s disability, earn an income and strengthened me,” says Sanda, who joined the center in 2000 and now supports other members by sharing her own experiences and offering free counseling.
Nyengeterai Muyembe, right, with a mother in one of the children’s play rooms at the Batsiranai center. Muyembe’s mother Margaret started working at the center to make money to support her family. (Sally Nyakanyanga)
The Batsiranai Craft Center is run by the Harare branch of the Zimbabwe Parents of Handicapped Children Association, a network mainly of mothers of disabled children. The association was formed in 1997 by women who were attending therapy sessions with their children at Harare Central Hospital. Now the Harare branch has 23 support groups, each running a different project to help members earn an income. Some even include onsite daycare centers.
“Some centers are doing market gardening [selling produce grown on a small plot of land], peanut butter making, sewing and needlework, which the members sell for their own upkeep and to help meet the needs of their children,” says Theresa Makwara, the association’s coordinator.
Eunice Tole, 52, who also has a child with hydrocephalus, has been her family’s breadwinner since her husband lost his job in 2011. “The project empowered me to do other income-generating projects at home, such as selling clothes and domestic appliances on my own, earning me some more income,” she says.
For Muyembe, whose husband died in 2004, the work she does at the center has helped cover the high cost of Nyengeterai’s schooling. She pays $275 per term for her daughter’s special education, compared to the $30-$50 in tuition fees that parents pay for government or local schools. The often unaffordable tuition fees are one reason why less than half of the 600,000 school-age children with disabilities in Zimbabwe get an education.
Most of the mothers working at the Batsiranai center are hoping to make enough money to one day own land and build their own homes, to escape the higher rents and utility bills they pay as a result of having a disabled child.
“My landlord claims we consume a lot of electricity and water and that my child makes a lot of noise, even at night, so I pay more than other tenants,” says Nerica Redzire, who has a child with cerebral palsy.
Nerica Redzire says the work she does at the center helps her pay her rent and utility bills. Her landlord uses her child’s cerebral palsy as an excuse to charge her more than his other tenants. (Sally Nyakanyanga)
It may take some time for the women to realize their dream. While they used to make between $200 and $400 a month, business is slower these days. Each of the centers used to get financial support from various donors, but with the country experiencing economic instability, funding has almost dried up. As a result, many of the children have had to drop out of school, says Makwara.
But Munyembe says the support she gets from the center has already paid off. Her daughter is still walking on her knees but making good progress. “I have seen great improvements as Nyengeterai can talk, do domestic chores and prepare herself for school,” says her mother. She has also taken an interest in technology. “And now she always tells me she wants to pursue a career in computers,” says Muyembe.