Researching Disability

I said I would write some information about my research. I can’t give much detail at this stage for various reasons including confidentiality. My right hand man is Okello Thomas who helps organise meetings, translates, advises and discusses progress, and transports me to meetings by motorcycle or guides me on foot, maps and addresses being scarce in these parts. When there is time he is helping me transcribe the interviews we have recorded as well, which is brilliant. So far we have interviewed six key informants and got most of the data we needed from them.  This week we started interviewing children and young people themselves and getting some data about their experiences of being a child with disability and fragments of life stories. We were invited to a meeting hosted by Uganda Society for Disabled Children, which was very generous and helpful. While the information from those who try to help the children is valuable, what the youth provide themselves is much more significant. Several things have impressed us so far: first, the degree of additional disadvantage and poverty conferred on a person and their family as a result of disability, then the discrimination that children with disability suffer, no doubt partly as a consequence of the disadvantage that follows them. When this is combined with the lack of facilities to manage the consequences of the disability the end result is extreme hardship. There are good policies in place and good work being done by some dedicated people to improve the situation but it does not reach everyone who needs it and there is a long way to go.

Some of this is quite distressing to hear about and we have to make sure that we deal with the emotions raised, and report any risk or abuse we hear about to the right authorities. Towards the end of the attachment we plan to feed back our findings to our informants and hopefully have a mini-workshop to explore what actions might follow, as well as report to the child welfare authorities here and the host organisation of course. Now I must try to organise some of the stuff we have collected!