A mom’s double heartache

Sarudzai Mupangi Features Writer
Most teenagers are crazy about owning a variety of electronic gadgets to keep up with the latest trends in lifestyles and entertainment among others.
Some as young as 13 already own cell- phones, iPads, PlayStations and know how to operate even the latest gadgets. Sometimes they know better than the parents who bought them the devices.

Such fortunate people spend most of their time in the cyberspace and these “toys” are their companions.
This is a stage of life any person would like to go through.

Sadly, this just remains a dream for two brothers – Graphnot (22) and Precious (24) Kanengoni of Hatfield, Harare.
Poverty and disability have seen the two lead miserable lives and passing their teenage period in agony.

The brothers are a rare combination. Graphnot is visually impaired and Precious cannot speak, a combination most people can only imagine.

Their widowed mother works in a hair salon and the two disabled brothers spend each passing day in each other’s company.
Stigma is a big issue as their mother did not want to be named for fear that her workmates might speak of her children’s disability behind her back.

She had to make a difficult decision of choosing between her children and work. Spending time with her children meant that she would not be able to feed them as she has no source of income except her work.

“Everyday we quietly sit under the mango tree a few metres away from our room; there is nothing much to do,” said Graphnot in an interview with The Herald.

“We cannot converse whether in words or in sign language.”
Graphnot lost his sight in 2010 after suffering from meningitis.

He complained of severe headaches for over a year and was on many occasions forced to leave school when he had the attacks.
It so happened that one particular day, Graphnot could not bear the pain and his mother took him to hospital.

Graphnot was later diagnosed with meningitis but it was too late to save his sight.
Losing his eyesight at 19 was the turning point in his life as his world crumbled.
He has already lost any hope of ever going back to school.

Graphnot has resigned himself to sitting at home with his brother who cannot speak.
He says he has no dreams at all.

Their mother said Graphnot had suffered from serious headaches prior to losing his eyesight.
“He was a brilliant Form 3 pupil at Cranborne Boys’ High School and for over a year he returned home on many occasions because of the serious headaches and I only gave him pain killers,” she said.

She added: “One day he was in more excruciating pain and I had to take him to hospital. It was, however, too late and the problem had resulted in permanent nerve damage which resulted in blindness. Life had dealt us a huge blow. He had to drop out of school.

“He is the stronger one of the two and has to take care of his brother Precious, who is wheelchair-bound and suffers from a combination of health problems.”

At birth, Precious suffered from Downs’ syndrome and brittle bones while his tongue was stuck to the base of his mouth.
He was lucky that his hearing was perfect.

Precious would break a bone every time he fell down.
He still has a metal rod fitted on his hip while he was operated on the other side.

One of his legs became longer than the other as a result but his bones are still not strong.
He is confined to a wheelchair.

Their mother struggles to give them the special diet they require.
The family lives in a small “house” measuring approximately four square metres. The room they call home was a garage but was partitioned by their landlady who is a distant relative to accommodate the three.

Word has it that the landlady, Sheeba Machisvo, could not stand by and watch her relatives suffer without assistance from the outside world.

Graphnot, Precious and their mother sleep on the same bed as there is barely any space for movement in the small room.
Precious cannot use his wheelchair while in the house.

“I know it is taboo to sleep on the same bed with my grown-up sons but there is nothing I can do. We have to share the room. I wish I could sleep on the floor so that the boys take the bed but the space is limited,” the mother said.

She revealed: “In the morning I take Precious outside the house, sit him on his wheelchair and clean their mobile toilet. It is a simple chair at first glance, but if you look properly there is a bowel at the bottom which they use as a toilet.”

According to Graphnot, the men use the conventional toilet situated next to their room under the mango tree and they have to relieve themselves in the open.

To show how bad their living conditions are Precious could not wait for this news crew to leave when nature called.
He wheeled to the mobile toilet a few metres from the mango tree, pulled his trousers down to the knees and he relived himself while we watched.

There was nothing to be embarrassed about. After all, that is what they always do; he had no choice.
After using the toilet for the whole day the mother only empties and cleans it in the evening when she comes back from work.
The toilet is placed at the same spot so that Graphnot can easily find it.

The men cannot use the toilet used by the rest of the tenants. They fear that they may end up being accused of messing it up.
Before finding “refuge” at their current lodgings, the family was thrown out of several houses after failing to pay rent on time.
“I do not pay anything where we are staying now as the landlady, who is also widowed and a mother of six, said I could use the little money I earn to buy food but it is too little,” the mother said.

Graphnot and Precious are like big babies. They simply cannot do anything for themselves.
“The landlady gives us food and checks on us whenever she is around but right now she is out of the country. At one time she took us to Greenwood Park and it was a different experience for us,” Graphnot said.

Mrs Gladys Kwedyo, a woman with disability, was touched by the plight of the two men when she met them at Greenwood Park on the day they were taken out and had to try and engage other people to help.

“I saw them with my cousin and I was touched. My wish is to have them get help from well-wishers,” Mrs Kwedyo said.
Both men were once students at Danhiko but their mother could not afford the fees.

National Association of Societies for the Care of the Handicapped says parents of children with disabilities should not be shy to come out in the open.

He said coming out in the open makes it easier for the children to get assistance.
Nascoh director Mr Farai Mukuta said parents of children with disabilities should not spend their time worrying about what society thinks about their children’s disabilities.

Too much worrying, he said, results in them ending up hiding them from society thereby cutting them off from help.
“Sometimes parents are the ones who stigmatise and discriminate against their children, something that impacts negatively on the child who is further disadvantaged because of such an attitude,” Mr Mukuta said.

He added: “Parents should be a part of organisations for disabled people to help them come out of their shells and seek help and empowerment on behalf of their children.

“If a parent shies away then they are also described as disabled. They have to accept that what they have is a gift from God and learn to live with it with a positive attitude.”

It is sad that a blind person has to take care of someone who has brittle bone disease as it may result in the creation of more serious problems.

Parents with disabled children sometimes keep them away from the usually judgmental public which in some instances is insensitive to their plight.

Non-governmental organisations that purport to represent the disabled have been rapped for setting up institutions to get funding from donors under the guise of wanting to assist them. Both men were briefly in institutions for the disabled but had to withdraw due to a combination of reasons.

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