'Who will look after our children while we work?'

Every morning, Johanna Nghiwete* undresses her son, places him on newspaper in a cardboard box and hides the box under her bed.

She locks her corrugated iron shack and then goes to work.

Her son is severely disabled and cannot move or speak. Nghiwete, a single mother, has to work to take care of herself and her son.

"I have to take off his clothes because if he lies in wet clothes all day, he will get a rash. The newspaper helps with that.

“I hide him under the bed so that if someone breaks in, they won't see him. If they find him, chances are they will rape him,” she said.

"It breaks my heart, but I have to protect my child and I have to work. When I get home, I bathe him, moisturise his body and lay him on the bed. Then I make food and we eat, play and talk until he falls asleep."

‘Her brain was damaged’

Nghiwete is just one of many single mothers caring for disabled children.

Helena Nuule and Claudia Nkandi are in the same boat, but they cannot work because they have to look after their children.

Nkandi has been raising her five-year-old daughter, Selma, alone since Selma's father died.

"After Selma's birth, we were sent home and three days later, she stopped crying. I took her back to the hospital and they said she had jaundice. After a month, they discharged her and said she has cerebral palsy."

Nkandi said she didn't notice that anything was different about Selma at first.

"At three months, I noticed that when I put her down to sleep, she stayed in that position. She couldn’t turn around by herself. I went back to the hospital again and they did scans and said the right side of her brain was damaged. They sent me home again."

‘Nothing I could do’

Nuule takes care of her seven-year-old daughter, Amalia, on her own. Amalia's father supports the family financially, but offers no further support.

When she was seven months pregnant, she went for a scan at the Onandjokwe hospital, where it was determined that Amalia had hydrocephalus.

"There was nothing I could do. I went home and waited for her to be born. After her birth, they said she had to undergo an operation. I just accepted it because she is my child. She is my first child, my blessing, my angel."

After a few months, Amalia started crying non-stop and they went back to the hospital, where they were referred to the Oshakati State Hospital.

"They couldn't help us, because the list of children with hydrocephalus who needed operations was so long, so we went to Windhoek where she was operated on."

Medication

Nkandi’s daughter Selma needs medication, and the Side By Side Early Intervention Centre has been assisting her in this regard.

“I went to the pharmacy at the hospital to get the medication and they said there were no pills and gave me pills for adults.

"Fortunately, I can read and figured it out. I divide the tablets into four to give to Selma. She has to take them or else her whole body goes into spasm.

“What about all the mothers with disabled children who don't get help and who can't read or understand English and unknowingly give adult pills to their little children?”

Love

Nkandi said people sometimes gossip about her and Selma behind her back.

"They ask why I walk around with a disabled child. Why don't I hide her? I don't know why I have to hide my child. I can't even think about locking her in the house.

“Where I go, Selma goes. I am not ashamed of my child. She is my angel."

Nuule also calls Amalia her angel and blessing from above.

"Amalia can't speak, but she remains a blessing. She’s a person with feelings and she deserves your respect. So, when you walk into my house, you greet her as you would any other child and you respect her."

Paltry government aid

The women each receive the N$250 state disability grant on behalf of their children, but they believe government can and should do more.

They added a centre with trained, dedicated, professional people who could look after their children while they went to work would take a massive load off their shoulders.

"I am very fortunate that Amalia's father takes care of us, but what if he stops? I worked until she was born and now I can't work because I can't leave her with anyone. I haven't had a holiday in seven years. I would gladly work if I knew my child was properly cared for," Nuule said.

Nkandi echoed her sentiments, adding that if government cannot set up centres for disabled citizens, it should increase the grant.

"After my husband's death, I only get the N$250 from government and some money I make by selling second-hand clothes. With Selma wearing diapers, it's not a lot of money.

“Fortunately, Side By Side gives me wet wipes and milk, but what if they can't any more? I worked all my life and I would go back to work in a heartbeat if I knew Selma could be taken care of by reliable people.”

– [email protected]

*Not her real name