GOMA - In the Democratic Republic of the Congo, mothers of disabled children, rather than being given the help they need, are typically blamed for the disability -- and often literally chased out of their homes.
Lingering local superstitions say that a mother is somehow responsible for her child's health problems -- and the consequences can be cruel. "They accuse me of being a witch and say it is my fault that my baby has a crippled leg," says Dany, a young mother, with tears in her eyes.
Françoise Walimwengu, 30, has been rejected by her family and forced to live alone with her disabled child. She had to leave behind her three other, healthy children, whom her husband wanted to keep.
"None of my ancestors were disabled. So why did my wife give birth to a child with a paralyzed arm and leg?" a man asks, after requesting anonymity. He explains that he made his wife and child leave his house, telling her, "I'm giving you this gift of love. That child belongs to you. No one will ever ask you for it. But you can forget that we are married."
Maggy, another woman, gave birth to a mentally handicapped child. Forced out of her home, she left her child at the doorstep of her ex-husband's sister's house. "Her husband had already abandoned her, and afterwards she abandoned the child. We became his parents," says Lydie Nechi Mungongo, who takes care of David, now six years old.
Such unhappy stories are legion -- and now a new organization is working to help these mothers and children escape from their social and economic isolation. "These mothers are alone and often illiterate. They make their living from menial jobs that bring in very little income," explains Étienne Paluku, president of the Association of Parents of Children With Brain Damage (APEC), which helps the most vulnerable women, especially with medical care.
Dr. Henry Tchongo Kataliko has treated many of these families. "It is regrettable to note that, almost always, and without any medical examination, the mother is blamed for her child's handicap."
One burden too many
Children born with a disability are above all a burden for families, because of all the money and time needed to care for them. "My child is eight years old, but does not study because nobody can take him to school. He needs help to eat, wash and go to the toilet," says Françoise Walimwengu.
"For the past five years I have not done anything. All I do is take care of my older brother's child, whose parents abandoned him," confirms Lydia, David's adoptive mother. Basic care is free for parents who are members of the association, says Dr. Henry Tchongo, a specialist in rehabilitation and physical therapy at the Center for the Disabled, who is in charge of their care.
APEC allows these parents’ voices to be heard. "For example, we had a demonstration in May, on the International Day of the African Child, to proclaim that handicapped children and their mothers have the same right to protection as everyone else," declares Clarice, a mother and influential member of APEC. She, too, was rejected by her family and her husband after giving birth to a disabled child.
APEC also supports women who want to go take their husbands to court for forcing them out of their homes. "Thanks to us, Jacqueline Kavira, a mother, won her lawsuit against her ex-husband," an APEC member recounts, proudly. The Goma justice of the peace required the family to give her back all her rights. However, the only payment ordered was for damages, and to date she has received nothing.
"Our goal is to eliminate discrimination and marginalization. We are often victims," summarizes Françoise Walimwengu.
"My father divorced my mother because I was born handicapped," says Béatrice, age 20. She learned to read and write through APEC, which helps some children who have no support at all to learn these skills. Béatrice believes that the best way to fight discrimination is for the courts to punish the guilty severely.
Unfortunately, Françoise adds, "my child's father did indeed promise in front of the judge that he would pay for all the child's needs, but he never kept his promise." To complicate the situation, "the government does not have any funds set aside for people with disabilities," says an official at the provincial division for social affairs. Yet these situations are not rare. In the past three years, APEC has registered more than 500 parents of handicapped children. Parents especially regret that Handicap International, for its part, is concerned only with handicaps caused by war.
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