Empowerment can be an intriguing process.
Whereas last  year I wasn’t sure if an action research approach would  resonate with mothers of disabled children in Khayelitsha, this year I am proven wrong week after week.


Last year mothers were shy to talk, this year they are so eager to share their experiences they keep interrupting each other. Last year some mothers could not discuss their child’s diagnosis and disability without becoming emotional, this year they share their life stories with a sense of pride. Last year they seemed to resign to their life’s fate, this year they are actively seeking small changes individually. Nomu is pushing her pediatrician to make follow-ups on a wheelchair for her child. Asa asked for a raise with her employer. Npofu has finally found the courage to leave her abusive husband and create a better life for herself and her child.

This is not to suggest that without this project mothers would not have experienced or made these same changes. They might have. They might have found different sources for empowerment within themselves or with others. It does however point towards the empowering force of bringing like-minded and/or similarly disadvantaged groups of people together. Merely sharing experiences can already have an empowering benefit. Imagine what would be possible when women heartily set their minds to fostering change!

One of the issues that mothers raised during our group sessions was the need for assistive devices. In most cases children who need devices such as wheelchairs and walking braces receive these for free from the South African government. The process however to get such a device is tiringly bureaucratic, vague and long, which sometimes results in wasted opportunities. Others have been able to get a wheelchair from government but face another issue after a few years. The child grows and doesn’t fit properly in the chair. Though the opportunity exists for them to get the device adjusted at a certain hospital, more often than not mothers do net get this done. When asked why, the complexity of their daily realities becomes visible.

For one, the wheelchair needs to be taken along to the hospital. This poses the first problem as wheelchairs are generally not accepted in public transport buses, due to impatience of taxi drivers. This means that they either have to hire a taxi, or they have to take somebody along who can assist with loading the wheelchair into the bus. This raises the second issue which is financial resources. A lack of sufficient income prevents most mothers to hire a car. Moreover, as the child also needs to be taken along to the hospital, having a chaperon in public transport means a quadrupled taxi fare; i.e. for themselves, their child, their chaperon and for the wheelchair itself. In these difficult circumstances it is no surprise mothers choose to not get the device adjusted. This results however in mothers retreating into their home due to a lack of mobility as well as physical issues for mothers as they carry the child on their back despite their weight.

Although mothers in Khayelitsha are focusing on setting up income generating activities, they hope to be able to raise donations in exchange for their sewing products to accommodate all children in their group with the needed devices. And also to assist each other financially with getting the available devices adjusted. 

As daily life carries on for the mothers, luckily also the project gains momentum. Every week we have a new mother coming, usually recruited by word-of-mouth. As expected, each session there are absentees as well. As suggested earlier, life happens, and the women try to make the best of it. Some of them attend once a month, others have been coming every single Saturday since last year September. It is growing into a group of mothers who are each other’s friends and confidants. But lest not forget, their progress in fostering change in their lives is also slowly picking up. After many sessions, informal conversations, interviews and discussions, they have come up with a list of their main issues and wishes in life. Particularly basic needs issues are raised. A lack of income and poor housing stand out. In addition, wheelchairs, sufficient information on the care for their child, finding a school or care centre for their child, and a lack of public transport for the disabled are mentioned frequently and put on the list. Now is the time to choose. What sort of project or projects would they like to set up and how?

Though housing issues are on the top of their list, they decide that achieving change in this department would be almost futile and extremely time-consuming and long-term. Therefore they choose to rather spend their time and resources on something that they deem more viable, which are income generating activities. Baking, sewing, a vegetable garden; all sorts of activities are deliberated. Eventually, as two of the women have extensive experience in sewing, they decide to set up an official sewing project with which they hope to gain an additional income. And to start of the project on a good note, they agree to all invest 200 ZAR (14 EUR) per person. This to me is remarkable as they only get 1400 ZAR per month on their Care Dependency Grant from the government. Let’s hope that their investments will go a long way in achieving change!

An exciting day! After a long summer break, today I will meet again with the group of mothers of last year. I am anxious to see them again and find out how they are. At the same time I wonder whether they will show up and whether they are still keen to proceed with this project. Even considering “African time” – a concept which indicates punctuality is not to be expected- the mothers are late. At half past twelve, only a handful have arrived. The greetings are warm and kind, yet we all wonder where the rest might be. Eventually Nompu arrives and explains. As she has functioned as an informal leader, other mothers have phoned or texted her to let her know they won’t be making it to the project. The reasons for their absence are exemplary for the struggles they face daily. It resembles the scientific literature found on mothers living in poverty. Asanda has trouble finding a babysitter for her child; Nobu can’t afford transport to come to our sessions; Sari is expected to attend a course for her work on Saturdays or she will face lay-off; Nodende’s mother is in hospital; and Tobi, Noku and Bonda all have to care for their disabled child as they got sick over the holidays.

Life happens they say, yet for these women the seemingly common life events may mean the difference between barely getting by and not being able to provide for basic needs. Attendance of an action research project in this case, or other government, parastatal or NGO projects can be severely compromised as mothers try to balance the care for their disabled child and the rest of their responsibilities. I am grateful for their determination to attend and to start making small changes.

One aspect about setting up an action research project is the inevitable friendships that will be formed. Whether these friendships only materialize during the group sessions, or reach beyond the project and into daily life, a form of connectivity can be expected when one works closely together for a period of time. Especially when intimate stories and life experiences are shared and common goals are formulated.

For the past four months I have been meeting with this formidable group of women almost every Saturday. Some of them only came once, but most of them quickly incorporated the weekly sessions into their schedule. They narrated their life histories, introduced their children to each other, laughed until they couldn’t laugh anymore, and cried for their shared pain. It is wonderful to see how strangers can become close friends in such a short amount of time. What is even more remarkable is how they were willing to open up to each other and myself. We have grown accustomed to each other, know what is happening in each other lives, and are not afraid to ask, advice and assist. 


Without it being part of the official ‘project’, as the mothers like to call it, it is visible that forms of empowerment are already occurring as a result of the peer support. One mother has been assisted to demand an official diagnosis for her 5- year old daughter to be able to apply for a social grant. Others were urged to make regular follow-ups on their application for a state-subsidized wheelchair. And for some the group was just a safe platform to share their struggles with an abusive husband; and they found patient and empathetic listeners.

To be continued in 2016!

In the past two sessions, one issue seems to be the recurring theme, namely information. Mothers express their frustration with a tremendous lack of information. Information on the type of disability their child has, on the prospects for the future, on the right to education, on accessing disability grants, on available treatments and services and many others. Information in the broadest sense of the word. For the mothers to get a first sense of ‘what is out there’ in terms of information and services, we request a workshop with a national organisation called DICAG (Disabled Children’s Action Group). This well-known organisation is run by parents of disabled children. It is a campaigning organization that helps to raise the level of awareness of disability and challenges stereotypes and perceptions of disabled people in South Africa (see www.dicag.co.za). The director and another parent-member facilitate a very stimulating and informative Disability Awareness Training in which they discuss: 1) what disability is, 2) what causes disability, and 3) the different types of disability. The mothers have endless questions and unanimously decide to register at DICAG to become active members. Their need for information is insatiable.

During the second session, we take our time to discuss what they do for and with their child on a daily basis, their so-called caring or coping strategies. We talk about which activities are difficult, which are the highlights of their day and what they would like to change. It becomes apparent that the lack of information discussed with DICAG influences their caring strategies. Without having a lot of information on either the disability of their child, and/or the available services and organisations, their caring strategies tend to revolve around what they do for their child at home, and occasionally in the community. Activities such as washing, clothing, brushing teeth, playing, watching TV, going to church and taking the child to school dominate. The services that they do mention are the local clinic in Khayelitsha, the children’s hospital and occasionally the physiotherapist. 

As opposed to other research on mothers of disabled children, no reference is made to occupational therapists, speech therapists, counselling services, or recreational services etc. When asked whether their child needs for example a speech therapist, and if yes, why they do not attend one, the common answer is: ‘I don’t know’. That is, either they don’t know whether their child needs one, or they don’t know where and how to find a therapist in Khayelitsha. Considering the fairly well-established medical and NGO-sector in South Africa, the question arises whether access to services could be significantly improved by adding one actor in the chain from parent to services: i.e. a local ‘oracle’. One or several person(s) who function(s) as a walking database in each community for issues related to parenting a disabled child. Seeing that the social workers in most communities are overloaded, overworked and understaffed, a local ‘oracle’ could perhaps become an essential figure for mothers and their children?

Today we are tackling one of the most difficult and sensitive subjects to talk about. Unfortunately South Africa is known for its extremely high rate of sexual abuse, especially in townships like Khayelitsha. Children with disabilities run even a greater risk of being abused because of their perceived vulnerability and inability to defend themselves. It is no surprise that in previous sessions this came to light as a major concern for the participating mothers. In addition, topics such as alcoholism, crime and domestic violence invade our conversations regularly.

As it seems pertinent to discuss these issues in greater detail, but considering my non psycho-social background, we decide to bring in an expert to lead this session. This morning Mrs. Sadiku from the Thuthuzela Care Centre in Khayelitsha guides us through the emotional, frustrating and sometimes utterly devastating process of acknowledging past and present experiences and worries for the future. The much acclaimed centres of Thuthuzela, which stands for ‘comfort’ in the Xhosa language, ‘aim to reduce secondary trauma for the victim, improve perpetrator conviction rates and reduce the lead time for finalising cases’ (see http://www.unicef.org/southafrica/hiv_aids_998.html). Their knowledge about all forms of (sexual) abuse and aftercare is tremendous, and their impact in South African communities significant. We are very lucky to have Mrs. Sadiku with us today.

During the session, each mother is provided ample time to tell about her experiences, her questions and her worries in a group conversation. The stories stir up emotions in all of us. Mrs. Sadiku carefully answers all questions, comforts the women, and provides referral information and practical advice. She goes on to explain the risks of sexual abuse, how to recognize occurred abuse of your child, and how to act in such a situation. Though prevention is easier said than done, Mrs. Sadiku does make some valid points on prevention which seem to resonate with the mothers.

It is humbling and encouraging to see how these women, in such a short time, have fostered an intimate connection with each other to be able to discuss such a sensitive subject. This form of trust will prove essential in the near future when the group will work towards actively tackling such issues. 

Baby steps towards learning and action. In previous group sessions, various issues arose that the mothers indicated they wanted to see change. For example not being able to do physical exercises with their children at home, daily care struggles such as feeding, and mobility issues. As the pilot-project in Zimbabwe and the previous group at Kuti’s Day care centre had shown, the dynamics of an action research project in Khayelitsha need flexibility and adaptation. Whereas in literature one can read about active participants who come to a sense of understanding of their own struggles and how to change them, in Khayelitsha the mere fact of getting people together and having them sharing their life is a struggle. I am proud that this group of mothers is showing up every single week, and are actively conversing about their daily life struggles. However, a vision of possibilities for change, ideas and suggestions on what to do, and a firm belief in their own power is not yet present. Therefore I decided that the process of so-called conscientization needs to be prolonged and slightly adapted. I want to expose them to as much information and examples as possible to bring about a shared understanding of what is ‘out there’ and what might be possible. I believe this will go a long way for them to formulate their goals, express their ideas for change, and set up small-scale projects next year. 

So today in our group session, we are taking baby steps towards learning and action. Three incredibly kind ladies from the organisation Senecio have agreed to give a training on physical care struggles. They are a physiotherapist, an occupational therapist and a speech therapist, specialized in children with disabilities. The full session is dedicated to learning on stretching exercises, how to place your child is his wheelchair properly and comfortably, on easing feeding issues and much much more. The team of Senecio is patient, kind and very knowledgeable. The mothers are clearly learning new techniques that they were not aware off before. And more importantly, they were able and eager to learn more about the possibilities for improvement for their children. One mother mentioned: ‘ I never knew that with the proper training, Bongi can actually learn to walk. Her foot has always been like this, so she can only crawl. If I had only known before’. I am hoping that these forms of training combined with our group discussions will inspire new ideas, creativity and project suggestions. 

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.