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!

Life in Soroti

I have been here over 5 days now and made a good start with the research. Today I will just give a quick sample of life here and later I will post some information about my work.

I am staying in a basic room, although with the great luxury of a hot shower, a flush toilet, and some gas cooking facilities. The area where we are called Pamba and it’s pretty noisy, chicken rooster and goat cries compete with prolonged loud repetitive singing, recorded music from the drinking joints of various descriptions which abound in this district, children playing or yelling and several sounds I haven’t yet identified. The weather is warm and muggy, it’s hardly rained at all but there was lightning last night and I guess it will rain soon.

I haven't got malaria, and judging by the number of dead insects on my bed, I have an insecticide-treated net.

There are several teenage girl boarders on site and they love to sing worship songs, sometimes with beautiful harmonies, and to play games; they have enjoyed an enormous skipping rope I brought and they are trying to teach me some Ateso language and songs. You always get a greeting when you pass (they call adult men “Uncle”) and an invitation to share any food that is going.

Apart from the drinkers, nearly everyone in Soroti seems very busy working with little leisure time. Scarcely anyone was watching the Uganda World Cup qualifying game on TV (they surprised everyone by managing a draw against Senegal) or the Euro 2012, although quite a number turned out on Sunday morning to watch the local team play Moroto Town FC: another draw, settled on penalties.

Mostly I have been transported on the back of a motorcycle by Michael, centre manager, Tom, research assistant, or Fred, accountant (in ascending order of speed). It’s quite dry and dusty and hardly anyone wears goggles or even helmets so it’s a bit worrying when a car leaves you in a cloud of grit and dust: can the driver see where he is going? Maybe in a while I will feel up to driving myself by bike or car, but probably I will leave it to the locals. I also rode a boda-boda (motorcycle taxi) at night and I walked back to the centre from church on Sunday morning. I hoped to get the use of a pedal bike but this may not be possible. Other people have compiled lists of what you see on the back of a bike but I would like to add a breast-feeding infant.

More news soon!

Tom