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.