Three different outcomes – depending on where they were born.

1. Nobilo’s Story

Nobilo was born in a remote village in the Eastern Cape,about 10 years ago. She was the first child of Nonto and Andile. Sometime during the child’s first year,Nonto undertook the expensive and long journey to the clinic in the big town. At the clinic,she was told that there is something wrong with her baby. They said the child had Cerebral Palsy and that there was nothing to be done about it.

According to Nonto’s beliefs and those of her community,disability is the result of witchcraft. It is believed to be a sign that the ancestors have stopped protecting her family because of something bad they have done,making it easy for bad things to happen to them and for their enemies to bewitch them – which explains the birth of a child with a disability. People who give birth to such children are often shamed and labelled as ‘sinners’.  Because of this,mothers often abandon their children as soon as they realise that there is a problem. They will claim that the child has died because they don’t want to be shamed by the fact that they have given birth to ‘Sebopiwa’– a term for people with a disability that means the creation of something non-human.

But this was Nonto’s first child. She felt bound to her,unable to abandon her. She told Andile what the doctor had said when he came back from the mine over a long weekend. He told her that she must have done something to anger the ancestors. He beat her and then he left,saying that he will never come back. The community started avoiding contact with Nonto. Ashamed of herself and her baby,distraught over the loss of her husband and the cruel isolation of the community,Nonto gave in to the feelings of hopelessness and depression,and committed suicide.

Nobilo was left in the care of her grandmother,Nceba,who didn’t have the heart to abandon the child. She took care of Nobilo in a shack next to her own,never allowing anyone to see the child and never allowing the child to see the outside of the shack. She never spoke of the child. It was her secret. Years later,the community had no idea that Nobilo was alive and living in their midst. The child doesn’t talk and doesn’t move much. She makes ugly guttural sounds when she needs something. Nceba feeds her and takes care of her most basic needs,but otherwise ignores her. Nobilo suffers from neglect,malnutrition,bedsores and a host of other,unattended medical conditions.

Nceba doesn’t have information to dispel the old myths that this child is the product of witchcraft. She doesn’t know that help is available. She doesn’t know how to cope with what is happening. Every now and then she loses it and hits the girl. But mostly she quietly carries her burden on her own – aware,on a very deep level,of the human being inside that deformed shape and behind the inability to communicate.

After all,there is precedent in the community for what she is doing. Bonani,the stark-naked,raving-mad boy who is now a man,has been tied up in chains since childhood next to his mother’s house. He is fed and looked after. When it gets very cold,he is taken inside. At least the chains prevent him from hurting himself or others.

Knowledge is a scarce commodity in isolated,rural areas. People are left to their own assumptions and superstitions,with little information or understanding of the real nature of the problem – or of the possible solutions and help that are available.

2. Themba’s Story

Themba is 10 years old. He has a form of Cerebral Palsy. He lives with his unemployed grandmother,Nwabisa,in a shack in an informal settlement on the Cape Flats. He seldom leaves the house,not even to attend the local clinic,because it is simply too difficult to transport him. He does not attend school because the school for children with a disability is far away and his grandmother cannot afford the transport to get him there.

When Themba was born,his mother Lindiwe did not want to believe the doctor when he said there is something wrong with her baby. After all,the baby had all the right parts in all the right places. But it soon became apparent that her baby had been born with a disability. The doctor said that there were organisations that could help,but that doctor left and nobody ever mentioned it again. Lindiwe took the child to the clinic often during the first two years,but as the child got heavier,she went less frequently. The nurse who always helped her at the clinic she used to go to,stopped working there. The other people were unfriendly. It felt like a waste of money to take time off from her domestic job and pay for a taxi to go there and be told there is nothing they can do for her child.

And there were the rumours of witchcraft. Old friends were avoiding her. Lindiwe started drinking. She lost her job in the suburbs. One day,a long,long time ago,she left the shack and she hasn’t come back. No one knows what has become of her.

Themba and his grandmother are very poor. There are days when he doesn’t get anything to eat. His body is under-nourished,making it difficult for him to fight off illnesses. Themba is smart. He can kind of make himself understood with grunts that indicate yes or no. He has learnt many things over the years. His biggest fear is that there will be a fire again because his grandmother is now too frail to carry him outside the shack. The last time there was a fire,it destroyed 10 shacks,including theirs. Nwabisa and a neighbour managed to get him out in the nick of time. They lost everything in that fire.

Themba has no friends his own age. He hears their laughter and shouting outside the shack and sometimes he gets a glimpse of playing children through a tiny hole in the wall. But he doesn’t want his grandmother to help him outside,because he doesn’t want them to make fun of him and call him names.

His grandmother does not read or write and so,she doesn’t know about the resources that are available to assist children like Themba. And even if she could read,it is unlikely that she would come across relevant information because they don’t have access to the Internet,they don’t have a TV and there is little money to pay for luxuries like printed material. She has never taken Themba to the clinic since Lindiwe went missing.

Themba’s grandmother has a memory of a girl with #ff0 hair sitting in a chair that seemed to move all by itself on the pavement next to the road. She saw it with her own eyes out of the taxi window the one time she went to the clinic with Lindiwe. She wishes with all her heart that she could have one of those for Themba,even though it would be difficult to navigate such a chair on wheels over the sand in this informal settlement.

Themba is sentenced to life confined in a bed in a shack. He has very few prospects of learning much that is new or of participating in anything beyond the limited interaction he has with his grandmother.

3. Angela’s Story

Angela has Cerebral Palsy. She is not invisible. She is 10 years old and comes from a wealthy family. She has a custom-made,automated wheelchair and a laptop to compensate for her weak arms and legs. She attends a local,mainstream school in one of the wealthy suburbs of Cape Town. Her mother takes her to school in the mornings and picks her up in the afternoons,using the family’s second car which has been specially modified to easily accommodate Angela’s wheelchair so that she doesn’t have to get in and out of it. Angela’s classmates have been informed about her condition and are 100% accepting of her differences. Her teachers are supportive and constantly reinforce Angela’s unquestioned right to acceptance and inclusion. Angela leads a full life. She takes part in school activities,as well as wheelchair sports and she has a wide circle of friends.

Not that life is easy for Angela. She faces huge challenges every day,not least of which is overcoming the discriminatory responses to her condition from people who don’t know any better. And,of course,like any normal human being,she suffers from bouts of self-doubt,self-criticism and self-rejection. But then she is buoyed up by the loving support of a family that will not let her slip into oblivion. Life is tough,sure. But when you are loved and cared for and have the doors to opportunity and participation opened to you,then all kinds of things become possible.

The Effect of Poverty on Disability

It is clear that the same disability in different circumstances will have a very different effect
on an individual’s life. The life chances of a poor person with a disability are severely affected by lack of information,resources,assistive devices,access to healthcare,education and other opportunities.

But that’s not all:people living in poverty are also more likely to become disabled because of inadequate nutrition,poor sanitation,sub-standard safety,lack of information,and inadequate treatment of diseases – all of which in turn perpetuate poverty.

• Roughly 3 million South Africans live with a disability.
• Vision impairment in South Africa is the highest of all disabilities (32%) and it is estimated that 97% of all blind and partially sighted people in the country are unemployed.
• More than 80% of #000 children with disabilities live in extreme poverty and have poor access to appropriate health care,nutrition and early childhood development support.
• Children who live with a parent with a disability are also disadvantaged by the disadvantages and lack of assistance suffered by their parents.
• Poverty results in many disability grants being shared by
  the whole family at the expense of care for the child with
  the disability.
• Research indicates that violence against children with disabilities in the developing world occurs at rates at least 1.7 times greater than against their able-bodied peers.
• Children and young people with disabilities face multiple barriers,discrimination and exclusion in education and training. Human Rights Watch estimated in 2015 that over 600,0 children with disabilities are not in the school system in South Africa. #000 children form the biggest part of this group,reinforcing cycles of poverty,disability and marginalisation.

A challenge to affluent families who have a child with a disability

Only you know the stress,sorrow,emotional ups and downs,the financial impact,the silent despair,the heartache and the all-consuming exhaustion that comes from taking care of a special needs child.

Here is a challenge that will demand even more of you,that will require you to step outside your comfort zone and outside your normal boundaries. Yet it is a challenge that could bring immense healing,joy and love to your world.

Find a family in the ever-present township on the outskirts of your town that has a child with the same or similar disability as your child.  It takes compassionate insight to begin to understand the plight of a family taking care of a child with a disability,living on the fringes of society in a disadvantaged community.

You are uniquely qualified to do that.

Befriend that family. Share your knowledge,expertise,information and resources with this family. Walk a mile in their shoes. See if you can help them access the support,care and education that you demand and probably take for granted for your own child.

Start a support group for all families struggling with disability in your municipal area. Start a community volunteer group to help give the parents a break from the constant demand for their time and attention.

Acknowledge the life lessons that will inevitably be learnt on both sides. Write and let us know what transpires.

Image credits,top to bottom:Kenny OMG,Hilton Teper,Melina Huett