Contributions from: J. Mabunda.
Abstract
Increasing parental and community awareness about disability is a key influential factors in the movement towards inclusion. This paper describes a pilot project conducted by the Sunshine Centre Association in partnership with other sympathetic organisations which attempts to address this fact in Gauteng.
Educational and support services for the disabled preschool child are lacking in South Africa. In many cases communities react to disability with prejudicial negative attitudes or even cruelty and fear born out of isolation and superstition. The Sunshine Centre Association uses its own early intervention programme (START, an indigenous response to perceived need within local communities) together with workshops on inclusion for teachers and caregivers, in order to foster healthy, enjoyable interactions with disabled children. Assistance is given in caring for and facilitating the development of disabled children within the context of the child's family as well as in the wider social environment. Community training centres are regarded as resource centres where communities are sensitised and information and support for families of disabled children is available and aimed at enabling such children to participate in community life. The focus is on identifying and removing barriers which exclude children, and on making a collaborative effort which spans poverty, culture and loss.
Nelson Mandela said that if children are to be recognized as the most important human asset for the future, then the investment in children's health and education is not a luxury, but a critical necessity for the reconstruction and development of South African society (Mandela, 1996, R.D. P Office).
There has been an historic neglect of early childhood education in South Africa. The previous government believed that early childhood development was not their responsibility, but that of the parents and their communities. As a result the provision of services was restricted to only a small percentage of children. It was also discriminatory with regard to race, geographical location, funding and special needs.
Apartheid impacted upon family structures, located many African families in poverty stricken, inadequately serviced areas and created levels of violence. Unfortunately this spawned large numbers of children with special needs, including disabled children who were further compromised by the risk of poor nutrition, illness and lowered educational achievement (Davids, 1998).
This gloomy scenario was exacerbated by traditional beliefs and practices surrounding disability. In South Africa the birth of a disabled child is often seen as a negative event. The mother is usually made to feel responsible and can be accused of anything ranging from being unfaithful to witchcraft. The disabled child is considered a shame, a sign of God's punishment and therefore someone to be hidden, or even, in some rural areas, killed. It is hardly suprising, therefore, that increasing parental and community awareness about disability is considered a key factor in the movement towards inclusion.
The costs of the past are high. The rebuilding of a system that provides equal opportunities and redresses the injustices of the past cannot be done in isolation. All government departments, non-governmental organisations, parents, communities and other stakeholders need to join hands to help build a safety net to protect the rights of all children.
This is the background against which ASHA (African Self Help Association) SCA (the Sunshine Centre Association) and the West Rand Department of Health formed a partnership in order to conduct a pilot project in Mohlakeng, a large African township in Gauteng. The primary goal of the project was to develop and test a multi-service model which would support families with disabled children and enable them to meet the needs of their children and to improve their own and their children's circumstances.
Certain core beliefs fueled the approach taken by the Sunshine Centre Association. (Sunshine Centre Association, a non governmental, community welfare organisation, is committed to the optimum development and inclusion of children with disabilities.) Sunshine uses many approaches to help promote an inclusive society. We believe inclusion involves so much more than just placement and schooling. A whole range of strategies within communities or societies is necessary to ensure that all children have equal access to an education which will equip them for life as part of that community and which will develop their potential. Training is central to our approach.
We begin with the training of parents, community workers, pre-school practitioners and other professionals in the use of our early home intervention programme, called START (Strive Towards Achieving Results Together). This programme originated as an indigenous response to perceived need within local communities and enables parents of disabled children to play a proactive role in their children's development and to reclaim some control over a traumatic part of their lives. Habilitation of a disabled child is best done within that child's home environment with the child's caregivers as the primary training agents. START teaches families what they can do to help the child as well as providing a system of support and encouragement. Emphasis is placed on forming a partnership with families and on facilitating the growth of both the parents and the communities capacity and skill. It has been particularly effective in communities disadvantaged by poverty, social disorganisation and inaccessible or non-existent services.
Sunshine Centre Association also trains teachers and practitioners in the use of an inclusive approach in day care centres, pre-schools and classrooms.
The Mohlakeng Pilot Project was to take place in 3 phases:
The first phase went well. According to trainees they liked the fact that SCA was actually involved in the process and spoke from practical experience. Some groups were taken to our SCA Craighall pre-school which uses an inclusive approach. They were given permission to observe freely and to ask questions of our patient, experienced teachers. This experience was extremely well received and definitely made a huge difference regarding changing attitudes about inclusion and disability.
On such occasions trainees are also able to see how Sunshine uses the transdisciplinary approach to help and support our teachers. Sunshine's therapists work closely with the parent and the teacher, within the classroom environment, sharing skills and devising rehabilitative routines, which exploit natural activities. Our approach incorporates every single person with whom the child may have contact during the day (from his/her peers to the taxi driver or tuckshop mum). Far more practice and consolidation of remedial exercises is possible and it provides benefits for ALL learners.
Sunshine constantly focuses on the eradication of negative prejudicial attitudes, because it has been found that positive attitudes in teachers carry far more weight in determining the success of inclusive education than the availability of resources. A deep assumption held by both professionals and lay persons is that information or education is likely to change attitudes. It is often further assumed but rarely assessed, that change in attitude will lead to behavioural change. Evaluations of Sunshine's workshops with teachers on inclusive education have shown this to be the case.
Jumaima was instrumental in making the second phase a reality, and she's going to tell you about it.
The Second Phase (Jumaima Mabunda)
In the first meeting with ASHA, Sunshine was asked to help the parents of disabled children in Mohlakeng. I was involved in the project because I was a parent of a disabled child. I am also a community worker with a good understanding of START, our early intervention programme.
I felt great about this opportunity to increase awareness about disability. I also wanted to help and support the parents of disabled children in this area. Often such parents do not trust people who have not had the same experiences. I know they can feel very isolated and ignored. I understand from my own experience that many of them do not get support from their families because there is no understanding of the needs of their disabled children.
Many fathers of the disabled children do not give their support. My husband had great difficulty in accepting that our son was disabled. I was not supposed to walk in the street with my child. His father could not believe that other people could see the beauty of this child. I struggled because he refused to give me any money for the special food our child needed.
I know how lonely and frightened these parents can feel. I worried about who would be responsible for our child if something happened to me. I even believed it would be the best thing if my child died before me.
I became a community worker because I saw how parents of disabled children really need support. I knew that with training, parents could help each other. They do not need people who feel ashamed of disabled children. They need to talk to someone who can understand that even though the child is disabled, he is still a human being. He does not have a disease which can affect other people.
The Community Rehabilitation Workers of the local Health Department helped me to find the homes of some families with disabled children. I also gave talks about the START programme and about inclusion in clinics and primary schools. It was not easy at first because we had not worked in a partnership like this before. We learned that we had to plan ahead carefully. We also had to learn to communicate about suitable times to meet ad how much time was available. Transport was unreliable and expensive. It was confusing. We learned that it is important to be committed and reliable in the partnerships like this one.
We did not find many families with young disabled children as we expected in a big area like Mohlakeng. I feel that there are several reasons for this:
| § | I am sure there were other disabled children but they could have been hidden away by their parents. |
| § | In general, South African parents of disabled children do not know where to find services for their children. |
| § | There are only two clinics in this big area. |
| § | These clinics are not placed on the bus or taxi routes. |
| § | Too many people from other areas try to use these clinics. |
| § | More often than not, there is no medication available so parents seem to feel that there is little point in struggling to get their disabled child there. |
| § | Sometimes taxi drivers refuse to take disabled children as passengers. |
There were many transport difficulties in Mohlakeng. At one of the homes I visited , the mother and her daughter had both had cerebral palsied children. The daughter had to attend high school so her mother cared for the two children. It was impossible for her to get both of them to the taxi rank, so she was unable to take advantage of either clinic or schools facilities. She had no knowledge of what help was available, so I asked the CRWs to find out about a grant for her. This was another example of how well our partnership worked.
Teaching such a parent about START meant that she could help her child. I remember how powerless and confused I felt because I could not understand why there was no "pill" or " muti" to fix my child. When I learned the exercises and activities in the START programme, I felt empowered. I could do something for my child. This helped me to accept his condition. Now I can help other parents to do the same.
I explained the START programme to the parents I worked with in Mohlakeng. They wanted to know how to help their children. So the Sunshine Centre Association agreed to train them at the Jim Joel Centre in Mohlakeng. This was the third phase of the Project.
Gill will now conclude our presentation.
At this stage of the project, it has been decided that a number of practitioners from the initial "inclusion workshops" are to be identified. Negotiations will be conducted as to whether these teachers will allow their centres to become models of inclusive education and accept disabled children from the surrounding neighbourhoods. One of the START trained mothers, Dorah Motha has agreed to work either as a teacher's assistant or as a consultant to these centres in order to further guide teachers in their care of the disabled children at their centres. Trainee practitioners from the Jim Joel Resource Centre will visit these centres and learn about the practical side of inclusion.
Dorah will also be encouraged to use her newly acquired skills as a START worker within the Mohlakeng community. Parents need to be reassured that their disabled children can be helped and that places for them in the neighbourhood facilities do exist. The Mohlakeng public needs to be made aware that disabled people are not deviant, incompetent and unhealthy objects of fear who are perpetually dependent upon the welfare and charity of others.
The co-ordinator of the Jim Joel Resource Centre is working with Welfare, Health and Transport authorities in order to ensure that a secure safety net of necessary integrated services can be created for our Mohlakeng families.
At this stage, the implications of this intersectoral initiative are exciting. Further links with the Department of Education should ensure even greater empowerment of families of young, disabled children as vitally important role players in the successful inclusion of their children.
This model is to be used in 40 ASHA resource centres in Soweto enabling roughly 20,000 people to solve their own problems at local level. In this way, through exchanging and sharing ideas, experiences and resources, barriers which exclude children can be identified and removed.
To paraphrase another famous president, J.F. Kennedy:
The problems facing the disabled, their families and those working with them will never be solved by cynics and sceptics, but by people who can dream of things that never were.
South Africa has set in motion a dream that few thought was possible. People with a disability can be part of that dream.
Bibliography:
Davids M, 1998. Progress Report: GPAC. Unpublished paper submitted to NPA for Children Steering Committee.
Mandela N. 1996 Children, Poverty and Disparity Reduction. Towards fulfilling the Rights of South Africa's Children. "Ministry in the office of the President" (Reconstruction and Development Programme) Pretoria.
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