Jean E., runs a program with a large NGO called Afrika Tikkun in South Africa. This NGO works from early childhood education to skill training for young people, in townships and very poor areas in the center of Johannesburg. Areas that were deserted by white people at the end of apartheid and was occupied, mostly informally by working class black people and by immigrants. So entire high rises are occupied illegally and that creates an amazing concentration of poverty and tensions.
Afrika Tikkun discovered that many communities where they had started early childhood development programs and after school programs were faced with families having handicapped children and no programs, and no school would accept them. So the NGO asked Jean to design a program for these children.
Jean decided to start with a large community based survey. She reached out to the whole community because if you want to make a change and if you stay only with people with a handicap for example, you will never change the prejudice of others. She discovered with the survey that children with disabilities and their families – most often their mothers, aren't getting their rights to an education, but were also rejected by the community. In one large township they found out that most often fathers of disabled children receive a lot of pressure from their families saying “what, we do not have handicapped children in our family, that cannot be your child, you have to leave that woman!”
So, with the parents of disabled children who took part in this survey with Jean, they started a community based approach, not a service for disabled children. They worked together seeking out parents with disabled children and trying to connect with them. They designed a dialogue tool to help parents describe their situation:
- how they feel
-what is the actual situation of the child (at home all the time, with some treatment, with schooling, etc…)
-what they know about their children's rights
-what they do about their situation
For each of these questions there are drawings, that they chose together, the woman miming the feeling and Jean drawing it. The drawings are very expressive and with this tool people can say yes, this is the way I feel, this is what I know, this is my child’s situation. They redo the survey every year, and people can measure that yes, they are slowly changing their view of their situation and their way of acting. They also offer a weekly support group. The parents that were visited have said that they come when they can and that it has really helped them to raise their head again.
Mothers from one of these support groups managed to start a preschool with kids mixed together, some who are disabled and some kids who aren't. The women explained that if kids do not grow up together, then of course there will be prejudice and violence. At the beginning the able bodied children were very surprised, they learn and appreciate this very different setting and watch out for one another.
These mothers who have a disabled child are facilitators within the community. They understand better than anybody else how to relate to families facing disability. Together with Jean, they also lobbied the education department to have a school for their children. The school, newly opened, is right across from the township. The first year of school for these children was a huge success for the whole community.
Jean E., South Africa
Please click on the video below to find out more about Afrika Tikkun's work and their Paint it Purple Campaign which was launched to educate the community and challenge stigmas around disabilities.