Developmental Disorders and the Consequence of Stigma

(Written by Kaeli)

            Our day began with a drive out to a nearby village to visit with the village healthworkers and any disabled children that needed to be seen, but it led us down a surprising path. The village healthworkers told us that there were many children that needed us, but when we arrived there was no one to be seen. As cell phones are not very common here, we had to then drive around to different people’s huts asking if anyone knew where the children were. We finally saw one of the healthworkers running through the bush towards us with a young boy. She explained that there was one mother in her town that was unable to bring her son to meet us, as the child had Cerebral Palsy, was still not able to walk, and was too big to carry.  Another mother in the village was not willing to bring her child out to see us because she was ashamed. This opened up a very real discussion with Brighton (the Rehab technician with whom we have been working) and our driver, Makaza. They explained to us that many of the local people view physical disability as something that is either the fault of the parents, or a product of witchcraft and that since they don’t understand it they may shame the parents of a child who is disabled. For this reason, many parents will choose to essentially hide their children from their communities, rarely letting their children out of the home. For those of you who read earlier blog posts, a theme is developing. We are seeing that the stigma around physical disabilities is deterring proper treatment of these children, and perpetuating a cycle. If the children don’t receive interventions then they are less likely to be independent and to participate in the community, but the fact that they don’t participate in the community already keeps them from accessing medical care and subsequent necessary interventions.

            While this is a difficult situation to begin to understand, we were heartened to hear that the village healthcare workers wanted to help break the cycle. We discussed importance of spreading awareness about the causes of developmental disorders so that the blame could be lifted off of the parents, as well as the positive effects of early intervention (See tomorrow’s blogpost by Anne.)  We also learned that a support group for disabled children is forming, and we met with the village healthcare worker who started the group, Anywhere. He said he noticed that it was easier to get parents to bring their children with developmental disorders out to meetings if they were told there would be other families with similar issues present. We encouraged him and talked with him about the success of similar groups in the United States. There is a long way to go, but I think progress is on the horizon! With a little financial support to help Brighton make more village visits, and to provide more assistive devices like wheelchairs and pediatric walkers, I think a tipping point could be reached.

            We only saw one patient for our village visit, but it was very informative and worth the drive for the discussion and brainstorming that followed. There were plenty of patients once we returned to the hospital to finish out the afternoon.