Listening to the Voices of Disability: Experiences of Caring for Children with Cerebral Palsy in a Rural South African Setting

Abstract

In this chapter we will foreground the narratives of the participants of this research in an attempt to demonstrate the relationship between these variables and to inform intervention and training models. While the focus of our study was on the condition of cerebral palsy, it became clear that the voices of this study seemed to echo those of many other individuals and communities living with the challenge of disability and highlights the relationship between disability and contextual aspects such as poverty and social exclusion.

Appendix

13.1.1 Participant M – Paraphrased Ethnography and Interview

Table 3

The interview took place in village XXX. We arrived at participant M’s home only to find that another participant, X, was the next-door neighbour. These two participants live approximately 8 km off the main road, and their homes are barely accessible by car. We phoned for directions, and the mother came to meet us at a nearby primary school.

Upon arrival we were clearly expected! Plastic chairs had been set out in a circle and the mother, grandmother, aunt and two men were sitting there. The child was in her buggy that had been issued by the hospital. A little boy who was about 5 years old was chasing chickens, while a toddler of about 18 months was wandering around playing with a ping-pong ball.

Soon after we arrived the men got up and left, leaving the property and walking down the street. They did not bid farewell or say where they were going. After explaining the purpose of our visit L (CBRW) took the mother aside to the edge of the property so that she could conduct the interview. The grandmother took responsibility for the child with cerebral palsy and sat with her on a grass mat under the trees talking softly. From time to time she also spoke to and scolded the other children.

I sat under a tree, observing what was going on and taking down field notes. Two of the men that had walked down the road came back. The one man lay down on the grass and lit a cigarette, while the other man came and sat next to me. He introduced himself to me in English and told me that he had completed matric last year and was unable to find a job. We sat and chatted for a while. The aunt had gone back to cleaning the house and a young man came out of the house, filled a bucket with water and took it to the wash area at the back of the plot. The house had a water point on the property and an electricity meter in the house.

The main house was modern and made out of brick and African jive music was drifting through the open windows. There was also a second smaller house on the property and a mud shack at the side of the house. The yard consisted of grass, swept ground and trees.

I noticed the close proximity of the neighbours and the fact that one could easily see what was going on in the neighbours’ gardens. I observed women doing washing, hanging washing up to dry, tending vegetable gardens and filling buckets of water. Once again the absence of male contributions to the daily chores was noticed.

One of my thoughts as I sat there was “I wonder how open these women will be able to be” given that there were three men sitting around trying to listen in on the interview. At one point the aunt stopped cleaning and sat a metre or two from where the interview was being conducted and seemed to be listening to what was being said in the interview.

The toddler wandered over to where the interview was being conducted and started disrupting the proceedings. The man who had been sitting next to me went over and picked the toddler up and brought her back to where we were sitting to play.

At one point the grandmother got tired of holding the child with cerebral palsy. The aunt went inside and fetched a walking ring, which she put the child into. In this way the child was able to navigate her way around the yard and sit with fairly good trunk control.

At around lunchtime the mother went inside and brought out a plate of soft porridge and gravy. The grandmother held the child with cerebral palsy on her knee and fed her by rubbing the porridge into her mouth then waiting for a few minutes for it to slide down her throat.

Later on in the afternoon I went and sat down on the patio near to where the research mediator was conducting the interview. The mother stood up immediately and brought me a chair.

Just after the children started arriving home from school the grandmother called for one of the young boys. She spoke to him in SiSwati and then placed some money into his hand. He ran off down the road. About half an hour later I saw the same child running back down the road in the direction of the house, carrying a 1-l bottle of Fanta Grape. He handed it to the grandmother who came over and handed it to me. L (research mediator) translated for her that she was giving this to me as a token of thanks to the white doctor who had come to visit them in their home and to thank me for all I had done to help the child.

The sense of support came through strongly in the interview. The mother reported “As soon as I knew I was pregnant my family-in-law took me into their home. I then gave birth at their home. (The child) was born one month early, so she had a breathing problem. I then took her to the hospital and had to stay for 1 week because at that time she was not even crying. She only cried after two weeks”.

In general it seemed that all of the family and the neighbours were fond of the child. However, the mother said she was not sure if she would be able to leave the child with any of the neighbours.

When asked about the cause of disability, the grandmother said she believed it was umuthi. She reported, “Anyway, I heard elders saying that if a child is disabled it’s because of cross-dressing of males and females within the house or young people dressing in older people’s clothes. So they say all this cross-dressing causes confusion within the family and can lead to disability”. The father took the child to traditional healers who said that the disability was the result of evil spirits and gave her herbs and liquids to drink but no improvement was noted. The mother reported “The father took her traditional healers and none of them were able to help her so he decided that we should leave (the child) as she is because he is sick and tired of all the run around”. The grandfather agreed that they should stop taking the child to traditional healers.

The mother reported that the first time she visited the hospital was because she thought there was a problem with the child’s tongue. The doctor found nothing wrong but referred her to the rehabilitation department. The mother said that she had noticed improvement at the hospital “…because before (the child) couldn’t move her body and she couldn’t roll herself but now she can”. Once again the mother’s main complaint was that it takes a long time to get a file at the hospital.

Both mother and grandmother reported that they found it difficult to accept the child’s disability. The grandmother added, “We believe God knows what he is doing”.

The mother reported that she needs something to help support the child’s body in sitting. She reported that she is currently using a tire to seat the child in. She has received a buggy from the hospital but there is no space in the house to keep the buggy so it has become damaged as a result of exposure to the elements.

Once again the issue of HIV and the prevention of contractible diseases was discussed. The mother reported, “I trust that I won’t contract anything that will affect (the child’s) well-being. But I don’t know about (the child’s) father because he is not with me all the time – he is working far from here. Anyway, I trust he is not doing anything that could affect (the child)”. When L asked if the mother thought that the father would agree to using condoms she replied “I don’t know if he will use it, and if I ask him and he doesn’t want to use it I don’t know what I will do”.