A beautiful day in Khayelitsha. The sun is out, people are roaming the streets, and vendors are colourfully presenting their goods. A perfect day for an interesting and active group session. Little do I know that this time the session will be an emotional one.

A Participatory Action Research project is supposed to be carried by the participants themselves. They discuss together what their main topics are and how they are aiming to establish change, only guided by the researcher when asked. However, in the previous sessions the mothers indicated they would rather have me guide the first few sessions so that they can get to know each other better, before they feel comfortable enough to take over the course of the project. 

Therefore, for today I have prepared an exercise which gives them an opportunity to tell their life stories to each other. This exercise is called Life River and asks participants to draw a river that represents their life. A steady stream indicates a peaceful and happy period in their life, whilst rough, sketchy parts of the river symbolize the toughest times. 

After I explain this exercise (a known and commonly used exercise in Action Research), the women seem reluctant to start. Under the impression that I haven’t explained the exercise correctly, I draw my own Life River as an example. By the time I am finished, two women are in tears. Crying bitterly. When asked, Judy explains that thinking about the course of her life is extremely painful. It hasn’t been a good life and she doesn’t want to draw about it, feel horrible afterwards and go home with a heavy heart. I explain that the purpose of the exercise is to discuss all life rivers after drawing to get to know each other. They understand and agree that sharing their stories will be worthwhile. However, a few mothers want to draw the river first and then talk, others want to talk first and then draw the river. So after the first group is done drawing, we start with Judy, who was crying so intensely. Unexpectedly, her story lasts for 1,5 hours and reaches such an intimate level of sharing that most women are crying in empathy with her in the end. Just one life story, of one mother, seems to represent the whole group and hits a nerve with everyone. 

When she is finished the other women express their desire to also share their story. The group decides that the next session, or two, will be dedicated to listening to each other life stories. A very personal, vulnerable and intimate way of getting to know each other and building trust. I believe a very brave decision of the group. Until next time…

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.

At last, fieldwork has started! With the help of a local day-care centre for disabled children named Kuti’s, I have been able to track down a group of interested mothers of disabled children in Khayelitsha, Cape Town. As expected, our first group session is a nervous and uneasy one. We all don’t know each other, and as for the mothers, they don’t even know what to expect. So our first session is about the introduction of the project and about getting to know each other. With some creative exercises we introduce ourselves to each other and learn some hilarious details about each other which definitely breaks the ice.  The fact that I, as a 32-year old researcher, do not have any children, is cause for confusion, laughter and questions. I discuss this openly and this gives way for others to share their personal story as well.

They seem interested in the project, particularly the fact that ‘taking action’ will be something they can do themselves, and even more so, they can decide on themselves. No one will tell them what they need to do, change or act upon. We will work as a group towards prioritizing needs and developing action plans that are embedded in THEIR daily realities. An exciting start!