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.

Some random observations

Don’t judge by appearances. A cook who is 5ft nothing and cook-shaped may surprise you by wielding a huge axe to cut firewood. A boy who looks contented may tell you he sometimes wants to cut his arm off when he gets tormented by other kids about his disability. (Don't let him have the axe!)

You miss the ones you love when you are parted.

People say termites are nice to eat. How did they find out?

Other people’s cultural norms seem strange, even wrong; our own seem perfectly natural. The more I understand gender norms here, the more I see them as problematic.

It feels strange when a girl or woman kneels or curtseys when greeting you, especially if that woman is wearing a guard’s uniform and carrying a rifle.

People of faith may not always be aware when they are applying social norms in the name of their God. Whichever country they are in.

Mothers are mostly amazing in what they do for their children. Fathers can be too but some treat this as optional.

English is not a single language. Although much of the vocabulary is the same, and the pronunciation can usually be deciphered, usage and grammar here in Uganda are very different. I guess the latter is based on the grammar of indigenous languages. For example I am much more easily understood when asking a question if I adopt the local usage: “We put the bike here?” rather than “Shall we put the bike here?”. This is fun if you like learning languages. It also creates interesting questions when transcribing interviews. I think it is clear we should report the words people say without “correcting” grammar to UK English, but I found myself uncertain how to write words that are pronounced differently. The most obvious is the “th” sound, almost universally pronounced as “d” here. Should I write “Dey failed to send me to school”? I feel this is more respectful of the source but would others see it like that? There is a lot more to learn about this. http://en.wikipedia.org/wiki/Ugandan_English

A Ugandan Wedding

The invitation stated the service was 'scheduled for' 10 a.m., a hint that reality might not conform to this vision. My friend advised me it might not start until 10.30. I walked to the church from town but took a couple of wrong turns, had to ask for directions and tramp around the dusty roads by the airstrip finally to arrive at 10.35. I was wearing smart blue linen trousers, a very sweaty white shirt and fortunately had finished the ensemble with trainers. My tie was in my bag.

Marquees were set up and preparations were in progress. Most of the seats were empty, though a large number of children was waiting patiently. Some young girls came to chat and quiz me about my family, my age and my camera. Two were twins called Grace and Mercy. They looked so perfect, clean, happy, thriving and confident, a huge contrast to some children I have been meeting. I later was told they were sponsored through Compassion. English worship music played over the mighty sound system. Someone fixed the power cord to the keyboard and amps. I hoped it wasn’t going to rain as the cables were lying in the grass where the wedding was to be conducted, and he made the connection by twisting the strands together and separating them with shreds of a polythene bag.

I had stowed a big bubble making kit in my bag and decided this was the time to get it out. A mass of children formed to grab for their turn but were eventually formed into a disorderly queue and happily made and burst bubbles for as long as I was willing to continue.

By 12.00 things were looking a bit more ready, white cars arrived with the bridegroom, hazard lights and horns going. Enormous excitement, running about, waving of arms and that African noise of female celebration, ululation, which was to recur frequently during the day. The groom emerged, stiff and sweating in a dark suit, mopped down by the best man. An elaborate welcome from the MC to the accompaniment of punchy chords on the keyboard. After a while the choir, musicians and the gathering congregation managed to agree a tempo and clapping and singing accompanied the groom, best man and page on a very slow dance/march to the front, with more ululation. One lady danced provocatively close to them whilst doing this. Probably an ex-girlfriend I thought. The MC gave another long address in Ateso with responses from the crowd. The children’s choir sang, clapped and swayed along with the band for another 35 minutes with diminishing congregational participation, while the bridal arch with ribbons and swags of white tulle was assembled and installed, as well as flower stands, tables and more decorations.

Squadrons of dragonflies gather and flit in the space. Occasional light planes land at the airfield. The local water pump next to the marquee is in constant use; people arrive with one or many twenty litre jerricans to fill and cart off. Suddenly the booming off-key bass stops and we enjoy a few minutes of unaccompanied singing and clapping until a shriek of feedback announces the restoration of power and normal service resumes. At 13.00 there is a pause in the music. Four young men stride across in a vaguely menacing way but take their places with the other guests. The marquees are filling up. I am still in the children’s area. The white cars set off again, a hopeful sign. Another long address in Ateso. The only words I understand are “Edeke” (God), Amen and Hallelujah. Eventually the chairman asks me to sit in the proper place. He assures me it’s not at the front but it could not be more prominent and I feel really uncomfortable. I’m the only white person present and don’t want to be singled out for special treatment. Family members are placed near me and the empty row of seats in front of me is removed. I move near the back. The choir starts again. Adults and babies surround me, we smile and sing along as best we can. The MC interviews a lady but she only gets to say one word. A stately lady guest in a colourful dress arrives carrying her wedding gift, a live chicken with its legs tied up. The talk goes on, the breeze drops and it’s getting hotter. I am thinking about lunch. Then at 13.35 the bridal cars return. More shrieking and running and another slow procession to the front through the arch, this time with 9 bridesmaids, one wielding a fan for the bride. As far as I can see, under the veil, she looks the person least happy to be here. Of course all of this requires to be photographed and video-ed. 

Finally, Pastor Job gets up to conduct the wedding ceremony itself in the hot sun. The couple’s attendants try to keep them cool. Much of the ceremony is like one in Britain. The differences are interesting. The groom is invited to lift the veil to check it is the right person he is going to marry. He does this very slowly, to much enjoyment, rounding the process off with a big hug. In the vows, emphasis is placed on the wife’s submission and service to her husband. The bride’s and groom’s relatives come forward to conduct the transfer of the bride to her new family. A baby starts crying and a breast emerges from a white dress in front of me to feed her. Rings are exchanged and a woman jumps up to yell, startling the baby, knocking over her chair and then sitting on the ground. When Pastor Job completes the ceremony, close family and pastors gather to pray blessings on the couple. The groom looks delighted but the bride is still tense. During the signing of the register at 14.30 I notice how sore my bottom is getting. Then the sermon starts. It is actually one of the best wedding sermons I’ve heard and I can learn a few things from it, but with introductions and greetings it takes almost another hour. Then I can get up and walk about a bit.

Fortunately there was only simple photography to be done and short speeches by both heads of household. Finally Pastor Job made me come and be photographed with the pastors and then sit with him at the front. There were many cakes, topped with fireworks, which combined with spray confetti seemed hazardous. The bride knelt to serve her husband cake symbolising her submission. At 16.30 more cakes were distributed by the couple to be taken to their village churches and as gifts for those who had helped with the wedding. Then guests came forward to greet the couple and give their gifts. Everything done ceremoniously. By now the bride was in a glittering red dress and smiling broadly. Finally, food was served. There were two sorts of rice, two sorts of potatoes, two sorts of cabbage and three sorts of goat, and soft drinks only. I’m always impressed by how much food people can pile on their plates on these occasions, more justifiably than some of us at home, and the work the women put in to the catering. By the time I had eaten it was 18.00, time to take my leave if I was to walk back to my digs before dark.

Though it was a long, hot and at times boring day and I did not know many people there, it was worth going to my first African wedding and I think my presence was appreciated. I might not turn up so early next time, though.

A VIP house call

Today I met an important person. I feel it was worth flying thousands of miles, days of car journeys and an anxious, dusty hour on the back of a motorcycle to meet someone so significant. I believe he will have a big influence in my life, now I have had a shower and changed my clothes.

I was led to his home by a special man, a headteacher with a disability who is an example to his community of what a person can achieve. He rode his battered old moped, crutches leaning on the handlebars, down country tracks and footpaths from his school followed by a cloud of fumes and then us on the bike. We were joined at the neighbour’s house by an old-looking lady who jogged home down the track with us. A few weary sheep and goats were tied at the side of the house when we arrived. Our companion turned out to be Agnes*, mother of Charles Edward*, the person we were visiting. Small wooden folding chairs were found for us to sit on in the shade of a tree while our host sat on the ground and we explained the purpose of our visit. Other women and children gathered; Agnes’ daughters-in-law and grandchildren. We are researching the impact of childhood disability in this district and on this occasion visiting a rural community to talk to children in and out of school and their caregivers.

Charles Edward has never attended school and is now twelve years old. We were taken into the home to meet him. It is a single-room oblong hut made of sun-dried mud blocks and a thatched roof. When we entered there was no sign of him, maybe our eyes had still to get used to the darkness inside after the bright sunshine. There was a folded wheelchair next to the bed. Agnes pulled back some hangings and dragged a cloth from the deeper darkness under the bed. Out came a broad smile, followed by the rest of a person. The silent happy smile and eye contact continued throughout our short encounter but Charles cannot move or speak; he only smiles, especially when he sees new people.

We were told that when he was two years old, a house collapsed, burying him. He was pulled out of the rubble and spent four months in hospital but the effect of the treatment was limited. He remains fully dependent, all four limbs paralysed, with no bladder or bowel control and unable to speak. The wheelchair arrived two months ago from the orthopaedic outreach clinic and is used when he needs to be taken somewhere. Before this, his mother carried him. He is quite frequently sick so the most likely destination is the health centre. He has pressure sores from lying on the ground; he does get turned but he has them both sides. Sometimes he is taken to sit outside but he seems to spend a lot of time lying there, under the bed. I could not bring myself to take a photograph.

Little help is available for his mother, though the community is sympathetic. The family is very poor and their additional expenses include clothing, bedding, laundry and medicines. Attending to his needs for care reduces the chance of his mother gaining income and adds to the burden of poverty.

Not many people know about Charles. We have seen several similar cases here in our short time, though his is one of the most severe. Each one is an important person, not just to their family and neighbours, but to us. What kind of a community, what kind of a country, what kind of a world do we all live in? Is it one where each unique person has value, and where everyone can participate as far as she or he is able? Do people receive support from one another to fulfil their potential, or are those who are not easily included just abandoned along with their carers? If we judge a society by how it treats its weakest members, what does this experience tell us? There are no easy answers, but there must be answers.

Giving some money to help this family would be a good thing to do but so much more needs to change. This country is actually quite progressive in taking affirmative action for people with disability in its political structures, and the disability rights movement is gaining strength. I was told with pride how President Museveni came to visit a bee-keeping project run by another teacher in this school who also has a disability. Nevertheless there are still too many people in Charles’ position and too little resource allocated to giving them an equal chance.

So that is why I know I met a very important person today. It may take me a long time to discover what it means in my life but I cannot continue to ignore the rights of people with disability.

*names have been changed

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!