The second group session is scheduled on a very rainy and grey day. To make matters worse, the people of Cape Town, and the whole of South Africa for that matter, have been faced with electricity cuts for the past weeks, so called load shedding. Today is another day in Khayelitsha with no electricity in the morning. As expected this influences the number of mothers that show up for the group session. Upon enquiry, mothers indicate that due to transport and electricity problems, they rather stay at home at this particular day. So we have to make do with a small group today. 

As I explain the purpose and nature of this research and ask the mothers whether they would be interested to participate, their responses are strikingly similar. They express that they are bored with their life. “I sit at home all day, looking after this one (her grandchild, author). I would love to come out at Wednesday’s to talk to other mothers of disabled children and discuss”, says Rose. Others confirm her story and we engage in a conversation about their daily activities. Cleaning the house, cooking, watching TV, sleeping and activities with or for their child are the most common daily activities, if not the only activities. 

Interestingly, these conversations about how they spend their days aren’t just enumerations of events. The mothers seem keen to discuss anything that bothers them, worries them or challenges them. Points that are raised during their discussions are the high incidence of sexual abuse of children in Khayelitsha, family members who are not supportive and difficult access to social grants. I notice that none of the carers is able to name a medical diagnosis of their child. They describe the disability of their child as ‘something wrong with his/her brain, eyes, legs etc’. Also, most children from this group are attending a school, a crèche or a training/day centre. In an Action Research project these conversations are as important as the actual exercises or methods used. They build up trust and a sense of sharing, togetherness and community. I am glad and honoured to see that the mothers are willing and eager to share their experiences. 

In the final exercise of the day, I ask them to list the first questions that come to mind that they would like to see answered during this project. The list that they produce is as striking as basic and universal. My own assumptions are readily challenged. Their questions are not focused, as I expected, on available medical services, income generation or other practical assistance. Instead, their questions all relate to the most fundamental question of all time: ‘How do I make my child and my family happy?’. Food for thought.