Two weeks and two sessions have passed. A bit to my own surprise, the group continues to grow. It seems like the word is getting out there in Khayelitsha. The participating mothers are bringing in their neighbours, church friends and even family members. I am grateful that these mothers are taking the time to join us and continue to participate. With a bigger group present, the discussions and conversations are getting more intense. The mothers are recognizing themselves in each other. This often leads to tearful, but warm and healing talks. In addition, a sense of understanding is gained by both the mothers and myself. A sense of what the main challenges are, what the struggles are, and what would be important to change. This is what action research is about. A process of so-called ‘conscientization’ in which the mothers are gaining critical awareness of their reality and are uncovering their problems and actual needs. By using creative methods such as ranking, drawing and a form of vignettes, we have engaged in talks on their hopes for the future, their biggest worries, their ideas on what disability is, and their notions of care. In the next coming sessions, we will discuss more about their needs, their children’s needs, their challenges and their vision for change. And lucky us, we got the infamous Vivian Zilo on board. She is the impassioned founder and director of Iliso Care Society[1] which runs 26 community projects in Khayelitsha. She has offered to be a mentor to this group of women in the next coming months. Last Saturday she gave an encouraging and though-provoking speech on empowerment. On how forming alliances, establishing support groups and growing one strong voice, can move mountains. Her speech resonated with many of the mothers, and felt like the proverbial first step to change. Soon more…

[1] http://ilisocare.org.za/

After the incredible Mr and Mrs Tiny Tots pageant, the research group sessions at Sibongile have begun! It is a process of learning, awareness, motivation, peer support, team building, training and much more that can’t be expressed. As Noma says in the second session: ‘We as parents, we know so little. It is so difficult to get all the information we need. We need to learn, we need to talk, we need to hear each other’s stories. I want to know more about what my child has, and what I can do for her. I want to know what has caused her disability, I want to know how I can help her to improve and I want to learn how she can reach her maximum potential in her life. There are so many parents out there that could use this sort of support. And yet, we don’t know who they are. They might be our neighbours, but we never see their child. We need to find them, and include them, and together we can learn and do so much. I am excited to be here and would be disappointed if we can’t get a big group of parents together. We need this’. 

This shortened version of Noma’s account of the role that an action research project could play in her life, reflects so much motivation, self-awareness, modesty and resilience at the same time. It reveals the importance of viewing these mothers not as passive, overburdened people who need ‘our’ sympathy and assistance. Instead, it touches upon our own insecurities, aspirations and hopes in our lives and provides for a far more positive and realistic view of these mothers; as resilient active women who strive for health and happiness, and can use any help they can get in the process. 

Impressed, humbled and empowered. That is how I feel after this week’s events. As fieldwork phase II begins, I am invited to attend a pageant at a second day-care centre for disabled children (named Sibongile) that I got in touch with. They invited me to come and speak to the parents and invite them for this research. Not really knowing what to expect, my partner and I head over to Khayelitsha on a sunny Saturday morning. When we arrive, various mothers are already present with their child and the place is buzzing with excitement and anticipation. Loud African music through the speakers, a dozen busy volunteers and children running around. After an hour’s wait, the event kicks off with a prayer and songs from the Sibongile choir (all mothers and volunteers dressed in beautiful white). The necessary welcomes and expressions of gratitude are shared and I get the opportunity to introduce my research to the packed centre by now.

Then the most important part of the day begins… One mother and volunteer aptly describes the importance of a pageant for disabled children. She says: “We are used to keep our children at home, because of fear for the community’s response. We don’t want our children to get hurt. But today we are here, together, to show the community that our children are special. They may not be as ‘abled’ as other children, but they are ‘able’ in a lot of other ways. Let’s give our children the time of their life, and make sure that they feel special and valued”.

What happens after this speech has left a deep impression in my heart and soul. It has given me more determination and focus to get this project of the ground and to give a voice to these mothers and their children. The Mr and Mrs Tiny Tots pageant is an event full of love, laughter, joy, beauty, strength and empowerment. One by one the children are called out by the MC under loud applause and upbeat music to enter the centre and wheel, dance or walk on the improvised stage and show themselves to the jury. The enthusiasm of the crowd is overwhelming. Every single child is welcomed by an intense applauding, whistling, waving and cheering crowd. The light in these children’s eyes lights up as soon as they enter the room. Their enthusiasm, joy and happiness just pours out of them by waving, screaming, dancing, wiggling, applauding back to the crowd. It was so humbling to see how Sibongile’s mission to show these children that they are special was coming to life.

Sometimes we, as a people, including myself, can’t look past the disability. Sometimes we only see their wheelchair, their inability to speak, or their deformed arms and we allow ourselves to refrain from any contact, because we don’t know how to.  But today, this event shows me how to look further. To look into their eyes and see the child in them. The child that longs to be loved, appreciated and valued. The child that loves to have fun, spend time with others and be happy. The child that enjoys getting up on centre stage once in a while and show the world who (s)he is and what (s)he is capable of. What an important event for these children, ánd for their mothers. One carefree day of appreciation, happiness and laughter leaves the mothers beaming with pride and love. Let’s hope that this research project can contribute to this strong community of parents, children, volunteers and professionals. 

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.

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!