As I arrive in Khayelitsha at Kuti’s Day-care center for our fourth session, I notice something isn’t right. Our translator and a few mothers are waiting outside with the doors to Kuti’s still closed. Lilian explains that last night squatters have entered the premises and broken windows, doors and furniture. This is a big blow for the center as they are barely surviving on sporadic funds. Since the police have been notified and will arrive shortly, we decide to grab some chairs and have our session outside in the sun, whilst the owner of Kuti’s and the police sort things out.
It creates a somewhat chaotic session. Two women are sharing their stories today but have to break off their story several times when the police is in hearing-distance and sensitive matters are discussed. However, the eagerness of these women to share their experiences, their struggles and their feelings is remarkable. Sometimes it almost seems like they have been rehearsing their story for years and this is the first time that they get listened to.
Ireen tells affectionately about how her child is brightening up her day as she is so talkative and so clever. Her daughter is physically disabled and seriously restricted in self-care. Ireen thus has to be home at all times to care for her daughter which she indicates is her biggest struggle in life but at the same time her biggest joy. It is easy to see that Ireen really enjoys spending time with her daughter at home. Since her daughter is not mentally disabled, they have lively discussions about almost anything Ireen says. However, when Ireen opens up about the time of the diagnosis in her daughters early years and the struggle of getting medical attention, she talks about her pain. “It took me a long long long long time before I accepted that there was nothing I could do and my child had to be in a wheelchair for the rest of her life”, she says.
Joana shares a somewhat different story. When Joana is in her early twenties, her sister passes away. Joana decides to look after her sister’s child who has cerebral palsy, despite the fact that she is still a youngster herself with no solid ground under her feet. As the child is severely mentally and physically disabled Joana knows she will be unable to care for the child on her own. Therefore she seeks for help from Kuti’s Day-care and makes sure that the child is provided with round-the-clock care. The social grant that the child receives from the South-African government is enough to pay for the day-care facilities. This is a relief for Joana since she is still looking to find a job. She says: “ I am lucky. Everything for the child is oke. She has all she needs. I just need a job myself”.
The two stories show that caring for a disabled child in a township like Khayelitsha is not a homogeneous experience. These thick and detailed descriptions of their life are not only necessary to build trust among the mothers, they also provide a first glance at the various daily realities of South African mothers of disabled children.
It creates a somewhat chaotic session. Two women are sharing their stories today but have to break off their story several times when the police is in hearing-distance and sensitive matters are discussed. However, the eagerness of these women to share their experiences, their struggles and their feelings is remarkable. Sometimes it almost seems like they have been rehearsing their story for years and this is the first time that they get listened to.
Ireen tells affectionately about how her child is brightening up her day as she is so talkative and so clever. Her daughter is physically disabled and seriously restricted in self-care. Ireen thus has to be home at all times to care for her daughter which she indicates is her biggest struggle in life but at the same time her biggest joy. It is easy to see that Ireen really enjoys spending time with her daughter at home. Since her daughter is not mentally disabled, they have lively discussions about almost anything Ireen says. However, when Ireen opens up about the time of the diagnosis in her daughters early years and the struggle of getting medical attention, she talks about her pain. “It took me a long long long long time before I accepted that there was nothing I could do and my child had to be in a wheelchair for the rest of her life”, she says.
Joana shares a somewhat different story. When Joana is in her early twenties, her sister passes away. Joana decides to look after her sister’s child who has cerebral palsy, despite the fact that she is still a youngster herself with no solid ground under her feet. As the child is severely mentally and physically disabled Joana knows she will be unable to care for the child on her own. Therefore she seeks for help from Kuti’s Day-care and makes sure that the child is provided with round-the-clock care. The social grant that the child receives from the South-African government is enough to pay for the day-care facilities. This is a relief for Joana since she is still looking to find a job. She says: “ I am lucky. Everything for the child is oke. She has all she needs. I just need a job myself”.
The two stories show that caring for a disabled child in a township like Khayelitsha is not a homogeneous experience. These thick and detailed descriptions of their life are not only necessary to build trust among the mothers, they also provide a first glance at the various daily realities of South African mothers of disabled children.
RSS Feed