“No, my girl is not bewitched, she just has an intellectual disability” | planet of the future

When Claire Banda, now a young woman of 25, gave birth to Joyce, her first child, three years ago, what surprised her was that she didn’t cry at the birth. Then the fevers her daughter suffered in the first weeks of life. He blamed it on his precocity; birth occurs only after eight months of pregnancy. But since the high temperatures do not subside, he carries his daughter on his back and takes her to the hospital. “They took her in for a week. Then they told me that something had gone wrong and that I had cerebral palsy,” he says. It was the first time Banda heard those words, and it was also the beginning of a new life full of fears and challenges, but also laughter, small everyday deeds and celebrations.

Claire Banda was born and lives in Ngombe, a popular neighborhood in Lusaka, the capital of Zambia, a country of about 20 million people in southern Africa. It is also one of the poorest nations in the world. World Bank figures show that almost 60% of the population has to live on less than €1.90 a day. Banda confirms that he is one of the people inflating this statistic. Also, things got more difficult after Joyce was born. “Before I gave birth I used to work, but I can’t anymore; I have to take care of my girl because her father abandoned me when she was born. He did not accept his disability. He told me it was my fault and left.” Her husband’s rejection was not the only one. In fact, in her immediate family, siblings, aunts and mother, she heard the diagnosis that would accompany her baby in the first months of life. “That girl is bewitched. It is witchcraft,” they judged.

Christine Phiri, a resident of Ngombre, a district in Lusaka, with her daughter Piurit. “He’s learning to open his eyes, sit and listen,” he celebrates.Jose Ignacio Martinez Rodriguez

“I went to a healer to see if he could cure my daughter. Nothing has happened. So I went to another. And then to another. But days passed and Joyce was not getting better,” Banda recalled. Zambian families with children with intellectual disabilities are well aware of these accusations of witchcraft. Christine Phiri, another 29-year-old resident of Ngombe, tells a similar story. A mother of two girls, she says that during the pregnancy of the eldest, Piurit, her blood pressure was abnormally high. The baby girl also did not cry after a long and complicated birth. At three months old, she was suffering from meningitis, which is why he decided to take her to hospital. The doctor told him that he had cerebral palsy and that he would not be able to do the same things as other children. Returning home, he endured a refrain similar to Banda’s. Neighbors, family and friends attribute the situation to a curse suffered.

Banda and Phiri also agreed that their daughters were the only victims of these spells. Until they went to a center that the non-governmental organization Special Hope Network, dedicated to children with intellectual disabilities and their families, has in Ngombe. Then they discovered a hopeful reality: there were more people in their situation, more mothers like them. “The first day, in 2020, I saw other guys very similar to my girl. All with different disabilities. It made me realize that I can talk to other people about everyday struggles, something that not everyone understands. Here they convinced me that my daughter is not bewitched, but simply has a disability,” says Phiri.

fight against stigma

“Local drugs for cerebral palsy, autism or other intellectual disabilities are often a drama because it seems that someone (usually the mother) has done something really bad, something that the devil has punished her child for,” says American Eric Nelson, founder and director on Special Hope Network. His wife, Holly Nelson, deputy director of the same institution, adds: “It’s not just that the behavior of these children is often seen as witchcraft; it affects other people too. If, for example, you spend time with this family, or even if you touch the baby, many people believe that you can get it. Both are reflected in the preferences of some Zambians for local healers and healers, in the habit of late diagnoses and in the low educational level of the majority of parents, often overwhelmed by the challenge of having a child in need. .

“Many families hide their children with intellectual disabilities in their homes and never go out with them because of the stigma that comes with it.”

Eric Nelson, Founder and Director of Special Hope Network

The NGO founded and run by Nelson has been in Zambia for more than a decade, serving 380 children and their families in six centers in Lusaka. It is extremely difficult to give more general figures on this matter in the country. A report by the Institute for Policy and Research on Southern Africa published in 2017, which explored the issue in depth with government sources and private institutions, estimated that 7.2% of Zambians have a disability, but noted that it was not known how many have a disability disability intellectual disability. “A lot of families hide their children in their homes and never go out with them because of the stigma that comes with it. When they all go somewhere together, they stay there, alone, locked in a room for long periods of time. Some neighbors don’t even know these people exist,” Eric Nelson continues.

The couple already had experience with people with intellectual disabilities before settling in Zambia. She has a degree in early childhood special education and specializes in maternal special needs. He is a pastor and has a degree in biblical studies, although his professional career revolves around these childhoods. They also form a family of five as they have three children, all with Down syndrome and adopted. They tell their story like this: “After we got married, since we couldn’t have children biologically, we decided to adopt. And since we had that professional experience… First came the twins, who are now 29 years old and are from Sao Paulo, Brazil. They were abandoned at birth and were in the hospital because their hearts weren’t working well; they needed open heart surgery. Then, a few years later, they contacted us again from Brazil. We were told that a boy was left in an orphanage that does not accept children with Down syndrome. They had even withdrawn food. When we got him, he was 13 months old and weighed 4.6 kg.

Their own life experience made them realize that many children around the world have gone through the same situation as their little ones, that there are thousands of them rejected, abandoned, stigmatized and even killed because they were born with intellectual disabilities. Then they searched, researched and decided: Africa would be their destination. Zambia, his new host country. It was 2010. At that time he started the Special Hope Network. “We started working individually with families, going door to door. We realized that a fixed center could be very useful for the community and for the mothers,” explains Eric Nelson. Next to her, the deputy director adds: “There are women who tell us: “We are impressed because our children learn something new every month. It shouldn’t be a surprise, right? But it is. Many of them have heard from their doctors: “This child will grow like a cabbage.” And you don’t expect cabbage to grow.”

a place of hope

The six centers opened since then focus on communication, motor skills, self-care, nutrition, medical support… In short, everything a child needs to develop properly. “And in mother training. Some of them can’t read, so we give them directions with pictures. It is important to teach them as well, because it can improve the life of the whole family”, guarantees Holly Nelson. Because in most cases, a mother or grandmother accompanies the child to the center. And the illiteracy rate among adult women in Zambia exceeds 65%. “It used to be very common for girls to get pregnant when they were 13 or 14, and when that happened they dropped out of school. Many mothers only have the knowledge they acquired before reaching this age.

Elizabeth Phiri, a 63-year-old woman, says her grandson Samford was born while she was living in South Africa. He was his daughter’s sixth child and was born when her husband had already died. “I went back for a few weeks when the baby was four or five months old, but I realized something strange was going on. He couldn’t even sit up by himself,” he recalled. Then began a pilgrimage through churches, local priests and magicians. But nobody fixed anything. Again, a doctor at a hospital came up with the diagnosis: autism spectrum disorder. “Until I finally got back from South Africa, no one took Samford to the Special Hope Center regularly. I have been coming for several months and the progress is great. Now he understands many things. I tell him: take this, come here… And he listens to me”, he confirms. The grandmother celebrates that from the thought of spells and spells she began to speak like this: “It’s like you gave me extra love. Looking at him when we come back from school… How I love him! And I really want to help you. That’s why I’m so grateful for this site.”

Claire Banda and Christine Phiri, who attend the same center, expressed similar sentiments. “My daughter can now do many things on her own. She takes a few steps, stands without help, speaks… I feel very happy and I can tell other mothers to have faith and hope”, affirms the first. “Mine has learned to sit up, open her eyes, listen… It’s good to see her improving; maybe in a few years I will be able to walk”, confirms the second.

Cerebral palsy cases like those of Banda and Phiri’s daughters are the most common both in Special Hope centers and in the country, followed by other disabilities such as autism spectrum disorder, hydrocephalus, microcephaly or Down syndrome. For children and their families, the struggle for inclusion, for education and for dignity in a context of scarcity and poverty, where there are hardly any government programs, when these children are adults, will last a lifetime. The deputy director of the NGO concludes: “Labor integration is extremely difficult because, due to the stigma, people do not go to enterprises where people with intellectual disabilities are employed. One of our dreams is to open a small field where they can work, live together, make plans like going to see a movie and have fun. A place where they don’t have to depend on anyone for help, where they don’t suffer accusations of witchcraft and where no one laughs at them.

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