An eight-year-old stunted cerebral palsy sufferer lives in abject poverty with 16 family members who are crammed into a corrugated iron sheet shack. They all rely on a N$250 disability grant from government.
The chronically sick, malnourished child lives in an overcrowded shanty at the informal settlement of Okahandja Park, where the poorest of the urban poor reside on the outskirts of Windhoek.
Looking much younger than his age the boy, Lissel Xoagub, whose body and head are covered in festering abscesses and sores, cuts a pathetic, skeletal figure. He is unable to do what normal children of his age can do, as he has to be nursed around the clock by his grandmother.
He was orphaned when his mother passed away in 2009 and left behind five children. His unemployed and HIV-positive grandmother, Angelika Xoagus, 59, struggles to look after him and the other grandchildren. Because Xoagus is not yet 60 she does not qualify for a pension grant.
Poverty is just the tip of the iceberg because children living with disabilities also face sexual and other abuse. Parents and guardians raising physically and mentally challenged children also face the insurmountable task of surviving on the N$250 monthly government disability grant.
Xoagus showed up with Lissel at a neighbour’s shack where New Era met guardians and mothers raising children living with disabilities and who looked stunted. One would have thought she was carrying a baby. Lissel is wrapped in a wafer-thin towel. He is clad in a blue check shirt and a baby nappy.
“He is not feeling well. I took him to the hospital on Tuesday. He has whooping cough,” Xoagus said.
She hands over a medical passport, which indicates Lissel is epileptic, has urinary incontinence, is unable to walk and cannot care for himself because of debilitating cerebral palsy.
“I feed him but he is not growing. I give him porridge and potatoes,” the grandmother said before undressing him and showing lesions that cover his body.
Xoagus said the grandson suddenly developed the sores. “He got medication when I took him to hospital,” she adds.
Lissel moans in a coarse voice because of pain. He coughs non-stop and his grandmother suspects he might have contracted HIV from his late mother.
“There is not enough food at home. It is difficult. His father used to assist us but not anymore. He works on a farm outside Windhoek. I can’t fight him. I wonder how he feels that his child is like this. I pray to God,” said Xoagus.
She said when Lissel’s father comes to Windhoek he promises to visit them but he never shows up. “He is cheating the child not me. The Lord can see him,” she remarked ruefully.
Xoagus said, “N$250 is not enough as it is just enough to buy some food. Lissel also needs warm clothes. I call the father but he does not visit us.”
Another unemployed parent who cares for a disabled child is Victoria Kaukinge. Her 13-year-old son Lukas Paulus looks normal from far.
Lukas can sit on his own but he cannot walk. He crawls and his speech is barely audible.
A doctor told the mother he is brain impaired.
“We bath, feed and take him to the toilet.”
She also said N$250 is not enough for a person his age.
“He wears size 36. He eats a lot, a loaf of bread is nothing to him but there are seven other children at home. I have to buy two loaves of bread,” said his mother. Lukas had a wheelchair but it fell apart.
While talking to this reporter she tells Lukas’ older sister to carry him into the shade. She said Lukas is heavy for her and that the government should at least increase the pension to N$400 per month.
Kaukinge adds that Lukas attended a school for children with special needs but stopped three years ago as she could not afford to pay the required N$ 350 monthly school fees required by the school.
“I want him to go to school. Now he just spends the day sitting under that tree. Maybe he will get therapy while there,” she said.
She said if Lukas attends school again she will be able to sell kapana to generate an income.
Julia Johannes also has a two-year-old disabled boy. Johannes said the doctor told her the problem is in Daniel Tunasho’s back. “He can’t sit up straight or walk. He plays but can’t touch objects because his hands are stiff,” said the mother, adding that she treats her boy like a baby.
She indicated that Daniel can only get a wheelchair when he turns five, but in the meantime she carries him on her back if they go somewhere.
She said although the hospital advised her to take her son for therapy four times a month, she only takes the boy twice a month.
“I find myself without money to take him to hospital. The hospital will call and ask where I am but I say I don’t have money,” she said. She feels government should increase the disability grant to N$550.
Johannes wishes that her boy will one day be able to attend school.