Conducting interactive workshops

I decided to conduct two workshops to feed back research findings from the first couple of weeks’ work. This was to return the information to the participants and other interested people affected by childhood disability. I wanted to respect those who had given information and try to give them an idea how I understood it. It would also be an opportunity to check it with them, see if they thought it was accurate and complete enough. And I hoped to explore with them how they could use this sort of work to their benefit. I had some ideas how it could help them but what was important was to see what they thought. The results were partly as expected, but also quite surprising.

I had more control in the first workshop as I had arranged to hold it in a church near the Global Care centre. The pastor thought it was a good thing for the church to support. We (research assistant Tom and I) planned to start at 10.30 and finish at 3.30, presenting and discussing the information we had gathered in the morning and offering to conduct an interactive workshop in the afternoon. We invited research informants and their guardians, a few other families with disability proposed by the local disabled children’s society, and a couple of members of the church. As usual some expected people did not turn up, and some unexpected people did. Additional family members young and old swelled the numbers to over 30. We emphasised our intention to start on time so were pretty punctual beginning.  Apart from the fact we had not spoken to people with sensory disabilities much, they were happy with the report we compiled to represent the experiences and ideas of the children and families. They seemed rather passive though so I got out my sticky coloured dots and asked them to place them on the presentation charts (we were using paper) against the problems and issues that concerned them personally. This led to much activity and debate and afterwards we had a better conversation with examples of people’s experiences. They opened up about some quite challenging things, like carers feeling anger towards their children, and parents neglecting children with disability. Lunch arrived quite late; people were patient but it meant we only had a short time to use afterwards. I decided to try out something I had been reading about; Tom and I had discussed it the day before. I wanted people to think about the underlying causes of the problems they face, and to see what they could do to change these, rather than looking to donors for handouts to help the immediate situations. We used a technique called the “5 whys” to give people a taste of participatory action research, hoping that they would see its power and want to use it more. Briefly, it means you pick a problem and keep asking why things are like this, until you get to something fundamental. It usually takes about five iterations. We did adults and kids separately. One of the church young men translated for me with the adults (we used four languages) while Tom led the children. The adults started with “why do people with disability live in poverty?”. Underlying reasons they identified finally were “we are a low income country”, “the laws that give us our rights are not being implemented” and “parents do not think it is worthwhile investing to educate children with disability because they cannot repay it”. We did not have time to do a further round of “why” after this but they could see how economic, political and cultural factors were behind what they were experiencing. The kids identified poverty, high population, poor diet, stress and lack of love. Actions we decided on included me making my research report available to them when it was ready, and them taking it to a meeting with their MP to request more State action to help. And the church was ready to host a local support group for families. I was delighted and I hope to be able to do a bit more to help plan future activities before I leave.

The second workshop was in a village about 20km away. A local person had convened it for me and it seemed to grow and grow during the two and half hours we were there. People brought their youngsters and everyone had a story they wanted to tell. I am not sure if they had been told exactly what the purpose of the event was but many clearly had an expectation that we would be handing out cash. The people arriving during the meeting hadn’t heard our introduction. So it took some effort to keep it on track and explain that I am not a donor agency and don’t bring any funding to do this work. However in the following discussion it became clear that many people thought they should set up a disability support group in their village. This was really what I hoped they would do, as it gives them a platform to support and educate one another, to campaign and inform others, and perhaps to plan income generating activities and manage distribution of any available funds. What I didn’t expect was that they would want to set it up there and then! They asked us to facilitate the process of choosing a name, purposes of the group, and proceeded to decide on a committee structure and elect officers and board members for an interim council. We also got them each to write down on Post-it notes a problem they had with disability, what should be done about it, and how that could be achieved. This confirmed the data we already had but added a few new elements.  After final formalities and prayers, chatting to a few individuals and looking at children whose parents had little idea how to care for them, we managed to make our exit. 

I am pleased with these developments even though I realise they are just beginnings and nothing is guaranteed. I am now planning a meeting with officials and key informants in the district to give them the results as well, and we have some more research tasks to do, partly directed by the participants in the workshops. These people have such tough lives and many of them are striving as hard as they can to keep their families going, agonising about whether to spend the little they can scrape together on caring for one child or buying food for everyone. Charities and other donors are right to be involved; if these people don’t need and deserve help I don’t know who does. However they need to gain power to help themselves. They need the ability to investigate problems and identify solutions and to campaign for fair treatment and that is what has the potential to lead to lasting change. A case for participatory action research. Mayenziwe ‘ntando yakho, if I may digress into another African language.