Although Huruma can sit on a table and follow lessons with the other pupils, the Ihomasa Primary School teachers where she should have gone to school, have refused to accept her, no doubt because she would be too much of a task for them. “But she deserves to go to school because she is mentally normal,” the medic notes.
Dr Mkumba says that taking care of Huruma’s toilet needs and feeding her is a demanding task that needs commitment and relentless attention. “Only her mother and a few others can do that,” says the doctor. The name Huruma means sympathy. The fate of Sarafina Huruma Msaka evokes sympathy as her name Huruma means. The eight-year old girl was born without limbs in Bagamoyo where her mother worked as a house maid. For arms and legs she had nothing but short, spindly growths, which barely reached her chest.
Medical examinations at various hospitals in the country including the CCBRT in Dar es Salaam have revealed that the poor limbs have no bones but mere cartilage. The case of Huruma was exposed to the world by the Iringa Region wing of a non-governmental charity organization Tanzania Resource and Assessment Centre for Disabled Children (TRACED) of which Dr Mkumba is a member. With its development partner and chief donor, Eriks of Sweden, TRACED, has reached and assisted many other disabled children like Huruma.
Efforts to make Huruma acceptable at the school by providing her with a wheelchair have not won the hearts of the teachers
at Ihomasa school and she has remained a disabled child living in ignorance at home. Only her younger sister, one of those close to and mindful of her, teaches her to read and count. “She can read and speak a couple of English words her younger sister who goes to a kindergarten school teaches her,” Dr Mkumba says.
Huruma may be a poor child living the life of a disabled who attracts some sympathy, but that of her mother, Elizabeth Ignas Mwani, is total misery. In 2004 she travelled from Iringa, her home region to Bagamoyo and there she got a job as a housemaid. The son of her boss took a liking at her and they became intimate with each other. Soon she was pregnant. Characteristic of romeos, the boy denied responsibility for the pregnancy.
“He stopped altogether any relationship with me,” Elizabeth explains. Her chance to go on working and earning her livelihood ruined, her future shuttered, Elizabeth returned to her parents in Iringa. They were shocked when they saw Huruma. What a child! Only three toes on what should have been the right foot. The young woman has strove to get any possible assistance for her penguin child. She returned to the coastal city to chance a Good Samaritan.
A friend of hers took her to Salvation Army with her little Sarafina Huruma. There, she filled in a form to go to the Comprehensive Community Based Rehabilitation in Tanzania (CCBRT). At CCBRT the doctors merely confirmed that the appendages on her daughter for limbs had no bones at all. Huruma’s father has long died without giving a cent for the poor girl’s welfare. But he did not want to depart to the yonder world and face the Almighty with the sin in his chest. “He admitted responsibility in his bed shortly before he died,” Elizabeth revealed to a workshop in Morogoro.
That, however, is not enough. Speaking at the workshop TRACED organized for its field officials, the organizations chairperson Ruth Saleh told the delegates that the disabled community deserved more than just recognition. Her organization could trace a disabled in the villages where they were treated as a stigma to their communities and locked away out of sight, she said. “But after tracing them, then what?” she asked. It was awful and such a national embarrassment that the communities and indeed the nation with so much at its disposal to assuage the pain of the poor, could so forget people living in such deep misery.
She said ours was a disabled nation for it failed help its needy where it could. Ms Salehe parodied the sinfulness of ignoring the plight o people with a disability with an illustration of a person who saw a person in need because of a disability but did nothing to help. “The disabled are those who fail to distinguish people in need of help,” she told the delegates. The TRACED chairperson, a teacher herself, has a daughter with a retarded mind, but her husband and she have worked hard to educate the girl. “When Ester was 9 years we celebrated,” she said, implying the difficulty of taking care of child with that disability.
Overall, said Ms Salehe, the Tanzania community needs more awareness on people with various disability because many cases show that unfortunate parents think having a disabled child is a curse and are therefore embarrassed about having them. “My husband and I discerned that our main problem was, first, having the child,” she said. “We therefore must take care of her, not run away from her.” The converse was the case with many other parents with similar children. She warned them, saying: “Do not take it as a punishment.
Take it as a blessing.” Supportive of Ms Salehe, TRACED Executive Secretary Ramadhani Mbonia says poverty is the main challenge to both guardian and parents in their endeavour to take care of their disabled. “The second one is the low level of awareness of the community and the local authorities,” he adds. According to Mr Mbonia, more efforts need be put in informing the community on the rights and needs of children with disabilities, who, as Ms Salehe puts it, are a blessing.
Lobbying meetings in some 24 project wards has produced positive results as parents or guardians are beginning to bring their disabled children out in public to play with their age mates or go to school. Assistance programmes have also improved general health status of 200 children disabilities in Bagamoyo, Isalanavu in Iringa Region and in Dar es Salaam.
Most important, says Mbonia, guardians or parents of disabled children have been given training in physiotherapy and nutrition to enable them to take care of their unfortunate handicapped people. Huruma’s father should have had such awareness training. Belatedly though, he admitted he had done wrong to deny the child and should have participated to her ubringing. “He admitted Huruma was his child just before he died,” Elizabeth says.