By some, this week could be called not-worth-mentioning, insignificant or even a failure. However, the events of this week starkly show the reality of living in Khayelitsha, especially for a parent of a disabled child, and are thus indeed worth sharing.

Just as last week, Kuti’s Day-care centre has been broken into. This time the culprits have been relentless. The centre has been turned upside down, damaged beyond recognition on the inside. Furniture has been torn apart, computers are smashed on the floor, and children’s toys are lying scattered and broken on the floor as a painful reminder of what the centre is supposed to be; a safe haven for children with extraordinary special needs. Kutala, the owner of and driving force behind the centre, is devastated. This means it will take even longer for her to re-open the centre and give a home to the children. The question is whether she will find the financial resources to furnish the centre once again. 

By coincidence, after an hour not a single mother has showed up for the group session. Not that we would be able to HOLD a session in the centre, but it does make us wondering. My translator phones the various ladies to find out about their absence. The reasons are a reflection of the daily struggle these women face. Buhle has got a chance for a one-day job, to stand in for someone else. This might be the only income she will find this month, so she wants to seize the opportunity. Since it is raining, Lindy doesn’t want to walk with her child to the centre, and the mini-bus has refused to accommodate her child. In Fezeka’s area of Khayelitsha, load shedding has arrived (power-cut). She wants to stay at home and wait for electricity to come back so she can do her cooking, washing etc. Nomsa’s child has fallen ill and has to be taken to the clinic which will take all day. So many different reasons, all legitimate and understandable. It clearly demonstrates that access to basic necessities cannot be taken for granted in Khayelitsha. Getting access to income, public transport, electricity and healthcare is a daily concern, takes up a lot of the mothers’ time and complicates caring for their child and their family. Hopefully next week, the odds are in their and Kutala’s favour and we can find a way to continue with this process. 

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.