Information is Key!

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?

---