It's over a month now since I submitted my dissertation, and in two weeks we will have the results of the marking process. Time for some initial reflections on the outcome of all that study and work.
I continue to support and advise on the disability project at Global Care Soroti: the day centre has started receiving clients and I look forward to hearing about it from Paul Rowell after his recent visit there. I hope he will have some advice for me on how to disseminate the learning from the project in the Soroti area.
I have also just advised PHASE Nepal about a training day on disability for their community health workers there, which I was very pleased to be asked to do.
People ask, am I going to use the degree to seek work overseas? Unlike my fellow students, I am not starting my career but in the latter stages of it. I still have a dream that one day I will find a way to make a bigger contribution in healthcare in Africa, but I think I have to be a little patient still. However I can advise, try to spread what I have learned and continue to inform myself on development issues, particularly as they affect people with disabilities. In the meantime I am sorting out some sessions in an interesting GP practice in Barnsley, with a high quotient of international clients as well as asylum seekers and also many drug users, which suits my skills and interests well.
I am missing the buzz and stimulus of studying, and the company of my fellow students, but have plenty to get on with at the moment, and am looking forward to a little holiday and remembering what it is to relax!
Thanks for reading,

Time to go

Just a short entry today as we prepare for departure.
The weekend was fairly restful. This was partly enforced by a minor illness on my part. However on Sunday we went to church with our friends in the locality and jumped and sang as best we could in Ateso with the rest. Later in the afternoon we went for a walk into the countryside and enjoyed a little peace and quiet. We visited Sam on the way back and I hung out for a while with him and his friends while Barbara sat with Lucy on the porch. We were given a gift of some eggs, which later proved very tasty.
Yesterday, sadly between funerals, we met with the Global Care managers to discuss their new disability project. One big change that has come about as a result of the research was that they were able to include the chairwoman and treasurer of the new Pamba Disability Action Group in the discussion and show that their input was valued now and in the future. We chose some priority actions to recommend for Global Care Soroti, in addition to the day care centre already planned, should funds permit, as well as advising on how the centre should operate. To me this feels like an excellent conclusion to this arm of my programme. I wanted to upload some photos of the team but the internet connection is too slow today.
Other achievements are the two disability action groups already set up and the impetus to start more, contacts and networks developed and strengthened, and people with disability and carers informed, encouraged and empowered. They tell me they have been given some hope that through their collective efforts as well as what support they can attract from state and NGOs including Global Care, they can make a big difference for themselves and the children.
Today after a last trip to the market and shopping in town, I am clearing up my office and making sure I have all the relevant materials I need for writing it up. I hope it makes some sort of sense when I get home as my brain has decided to join the primary school teachers on strike today. We will leave for Kampala and Entebbe early tomorrow morning and should be home mid-morning on Thursday after about 30 hours' travelling. I anticipate a joyful reunion with my two sons who are at home and, shortly after, with my bed.

A school for the blind

I wasn’t sure I wanted to go to the school for blind children at Madera. Probably because I knew it would be an uncomfortable experience. It is quite near, in Soroti, so eventually I decided to try to arrange a visit, as without it our study of childhood disability would be incomplete. Attempts to make an appointment by telephone failed so I went over to see if one could be arranged, after spending an enjoyable morning and early afternoon with sponsored children who were visiting the site to collect gifts chosen to help them and their families. And in another first I got to referee a girls’ football match. 

See Barbara’s blog as she is in charge of fun.

I was feeling a bit rusty on motorcycling so Tom and I agreed he would drive there and I would drive back. I was certainly much more relaxed driving myself at 40 kph than when a passenger, even though my increased security was undoubtedly illusory.

We received a warm welcome from the charming Sister who is the headmistress, and she said it was fine to talk to her and to some children, when I explained the purpose of the visit and the research. This Catholic boarding school was founded in 1955 so some generations of children have passed through. It takes primary and secondary students from all of Uganda so it uses English as the medium of teaching. Sister told us of the problems for the school due to the fact that few parents can afford the fees. She sees how poor they are and feels ashamed to send them away so she tries to raise funds where she can. Nevertheless a proportion of children start each term late as their families are trying to get the cash together, and some drop out. Children who complete their education here often go on to University and to employment. Without it, they would be helpless.

We walked with her round the school; lessons had finished and there was a relaxed atmosphere. The children were assembling for choir practice as they were to lead prayers in church the next day. We were lucky enough to be welcomed by them in song, accompanied by drums and piano accordion, and I said the usual few words of greeting and thanks in reply. They probably enjoy the platitudes spoken by visitors as much as I did in my school days so I made it brief.

Then she selected some “volunteers” to speak to us. We sat in a room not far away from the choir and chairs were brought. The children learn their way around the school and some are partially sighted and help guide the others, so it was not at all chaotic. We introduced ourselves and got consent for the research. I asked them to tell stories about their experiences as blind children in their families and communities, and then to talk about how they saw their future. What followed would take a few pages of blog. Mostly their immediate families were supportive, though in some cases only the mothers; once again fathers sometimes failed to support their children and some siblings could be hostile. Some said that they were only sent to school after the sighted ones were sorted out, if there was any money left. (Rather like me leaving the blind kids to the end of the study, as an afterthought almost.) One girl had a harrowing tale of abuse from her father’s family and her stepfamily, including assaults and attempted poisonings. A theme that emerged from a few of them was that there is a kind of double-bind that they face. If they don’t perform tasks because they are blind, they are called useless. But if they do go to the shops for something, or work in the fields, they are accused of faking the blindness to gain support. It seems people can’t accept that a blind person can do many things as well as a sighted one. Another difficulty was getting to and from school on the bus at the beginning and end of term. Conductors cannot always be relied on to tell them their stop and fellow passengers sometimes tell them all their baggage is unloaded when this is not the case. They usually take a bicycle taxi to school from the bus station.

Their ambitions were similar to those of other teenagers; to complete their schooling, go on to University, become a teacher, a lecturer, a nurse or a Gospel singer. One boy voiced his fear that the funding would fail and he would not be able to learn any more. Feeling moved and troubled by these kids’ courage and the doubt that clouds their futures, we took our leave and wished them success

Pamba disability action group

This morning we had the meeting to set up the Pamba Disability Action group. It was due to start at 10.30 and by 11 I had thought of abandoning it as so few people had turned up. We were waiting under the mango tree in the Pentecostal church grounds, while a noisy prayer meeting was going on in the actual church building. However by 11.30 there were plenty of people. I had wanted the locals to facilitate their own meeting but they didn't really seem to know how to proceed so I had to lead them to some extent by proposing the agenda and asking questions about how the meeting should proceed. We started by everyone stating their reasons for being present and hopes for the meeting. There was a good age range and young and older people with various disabilities and carers were all represented. One 7-yr old girl had no feet and walked in wearing home made bootees on her stumps. The family could not afford proper prosthetics for her. She was also deaf or at least so hard of hearing she had not learned to speak but had not had a formal hearing test. Her mother had made up a rudimentary sign language but this was no use for communicating with anyone else and was very limited. As things stand, she has no chance of going to school as the local one can't teach her and the school for the deaf is too expensive. I tried to link her mother with the local teachers of sign language, though it is already late to start learning. Ignorance is such an enemy here; even when help is available, people don't know they need it.
The people had lots of good ideas about what the group could do for them, and not too many relied on donor funding, so we could define the purpose and the name was agreed. Then we decided on the committee structure and conducted an election for officers and committee members. I did advise them against nominating the Pastor, lovely man though he is, as the board needs to consist of people with disability and carers. They included young people on the board, one of whom is the token male, but I think he will manage.
Everyone was very happy and grateful for the initiative and the first meeting is scheduled for 10 days' time. There are a few people around who will provide support and guidance as it gets started, so I am very hopeful that it will achieve a lot.
Tom told me that the group in Atiira that started less than two weeks ago now has over 100 paid-up members, is finalising its constitution, and plans to use the collected funds to act as a credit union that can provide loans to members for income-generating schemes. All power to them!

A feedback session

I was quite nervous by Tuesday morning and preparations started early. I cycled to town to get money to pay the sign language interpreter then helped the staff and skills centre girls to put up the gazebo (this reminded me of Hope House church back home), set out chairs for the meeting and make sure there was a ramp for wheelchair access. Guests and participants gradually arrived and we started only half an hour late. I was pleased that the Honourable district council representative for people with disability came on his trike and was keen to participate, along with other notables, disability activists and community leaders and some of the Global Care team. Tom helped me present the results. However the highlights were undoubtedly the moving and dignified testimonies from the research subjects I invited to speak. I introduced a young woman, saying I wanted them to hear from her, because her disability is visible, but her spirit was not. She spoke of how much abuse she suffered from her peers, how she had to fight to get her family to support her education and training, how girls with disability were treated by boys, and how even health care providers discriminated against people like her. She was asked by another person with disability in the audience; what were her ambitions? They encouraged her to pursue her dreams. She was followed by the mother of a child with severe multiple disabilities who is caring for him unsupported by anyone since the child’s father died when the baby was a week old. He can only make slight movements of his head and hands, and does not speak, but his eyes tell you that he likes to see people and try to interact. How she survives is a mystery, remember social security is practically non-existent. Again some of the influential people there had good advice and promises of support for her, but they got the message that people in these circumstances need a lot more help than they are getting. I had planned to highlight key messages at the end, but those present contributed a series of rousing speeches which made this unnecessary. After the meeting ended, several guests said how good and helpful it had been and that they thought that changes could result. I really hope so, and it is largely up to those people present to create the environment in which change can happen. I have some odd feelings about this situation which I am still trying to understand. I think it is to do with handing over control of something I have lived with for quite some time.

After the meeting and a short time to relax over lunch with some guests, I tried to settle down to write up my thoughts on the day. However instead I ended up driving to town taking the daughter of a staff member to the doctor as everyone was worried about her health. At least I could go shopping in the market while we waited for the test results. One of the stall holders asked me “where is Madame?” as it is so odd to have a man doing the food shopping. I will have to make sure she is with me next time. I ended the day writing my notes and blog as a thunderstorm grew and rain started, while the power went off and on.

To Kampala and back

Has it really been a week?

I seem to have been slacking on the blog writing front. Rest assured this is not the case for my other activities. Last Wednesday I was making sure all was prepared for the meeting with Global Care leaders in Kampala and waiting to hear that Barbara landed safely at Entebbe that night. Tom and I also paid a very enlightening visit to a local primary school that has pupils with disabilities. We were allowed to observe an English lesson in primary 6. Future perfect tense was the subject. There were about 150 children in class, though the roll includes over 200. It seemed to be mostly girls that were absent, and even those girls present hardly participated. The impression of significant gender issues is growing stronger. The teacher did a pretty good job, considering, apart from that point.
Thursday morning early Michael drove me with Fred, David and Bishop Job to Kampala. It took almost eight hours. We did go the long way round via Lira to the northwest but those roads are pretty good, whereas the clockwise route via Mbale is in an atrocious state. Ugandan roads also have lots of extraordinarily large speed bumps to make sure even the most robust trucks and 4x4s have to slow right down.  On this section nearly all of them have warning signs, but not elsewhere, so drivers need to be very alert. Driving’s a bit scary at times, particularly when passing pedestrians. When you are near a school early in the day there are hundreds of unaccompanied small children walking or running along the side of the road to get to school, usually in magenta, blue or yellow uniforms. However the only casualty we caused was a small pink pig that chose the wrong moment to cross the road.

I was very pleased to meet my wife Barbara at the conference hotel, as well as other Global Care friends old (from UK, Kampala and Rukungiri) and new (Kampala again) and to join in some discussions.

I was a little unsure how the presentation of the research findings would go down on Friday morning. I had looked at childhood disability very much from a social and community perspective in the qualitative study I was doing, and many of the actions that had been proposed by the research participants were to support household livelihoods, to empower people with disability in social and political arenas, and to address social attitudes and public services. This rather contrasted with the vision of the charity which has received funding to set up a day care centre. However everyone was very interested in the work and engaged in a lively discussion as to how it should influence the project planning and delivery. There is not necessarily any conflict between these visions. My main concerns are that people with disability should be involved in planning and delivering the project, following the mantra “nothing for me, without me”, and that it should not just implement a “medical” model of trying to help children to function better in an unfriendly world, but should support people with disability in on-going research and campaigning to change attitudes and services. In our discussions we also emphasised the importance of gender - the vulnerability of girls with disability, and the fact that the burden of care falls very disproportionately on women, many of whom are single.

Barbara and I had a bit of time off on Saturday morning and visited the lake of the Kabaka (king) of Buganda. More details of some of these activities on Barbara's blog here.

 

Saturday afternoon we drove back to Soroti and arrived about 8.30 pm.

Sunday we went to church with Sam and visited Michael’s house where he was playing parachute games with over 100 children. Not all of them could participate at once so I decided to see how many tunes I could play on my battered old red tin whistle. I sat on the ground and was nearly submerged by a press of small ragged children who clapped along and also sang one or two songs in Ateso whose melodies I could manage. Again see here for more details.

Monday Tom and I prepared for the meeting on Tuesday with key informants and local officials and representatives. I also had a long conversation with Simon, who is deaf. As we didn’t have a sign language interpreter this was done in writing. It was very informative to talk to a person who is starting to make contacts on the national political scene to do with disability. It is striking to see where Global Care has reached through the children it has helped who are now adults, and how they are now motivated to help children in their turn.Barbara's blog reports some of his story here.

Barbara and I went shopping in the little local market in Pamba to get some vegetables for our meal. This is a lively spot and people were pleased and amused at us wandering around trying to see what was there and find out how it was supposed to be prepared. I am getting used to women suddenly starting to breast feed their babies in the middle of other activities as well. This is a universal thing and does not call for discretion here. My next blog will give details of the feedback meeting on Tuesday.

A visit to Kapiri

I met my fellow student Rob in Soroti on Friday. We had a drink and then a look round the market and arranged to meet on Sunday at his place. 

The road surface between Soroti and Kapiri is probably the worst I have ever been on. I decided to drive myself in the minibus, the alternative being a motorcycle or a public bus. The buses look particularly hazardous – one I saw has a bent chassis so it travels at an angle. I arrived safely, dodging the worst potholes, and met Rob and the two charming young ladies who are looking after him; one is an excellent cook I can confirm. Apart from this amenity, his other facilities are also pleasant, though lacking electricity and tap water. It may surprise you to know that there are extensive wetlands in this area.

We met a local friend (Rob has a facility for making friends and is picking up lots of phrases in Ateso) and walked to the swamp. Moses invited us to go boating, even trying to bail out a dugout canoe with his foot, but we chickened out, as wetness seemed inevitable.

We drove to the shore of Lake Kasisi, arguably also a swamp. Moses had a swim while we looked on enviously, thinking about schistosomiasis and crocodiles (I was anyway). A bigger boat arrived but by the time we decided it would be nice to go for a paddle, the guys with the paddles had gone.

After a rest at Rob’s place, a meal and a couple of games of cards with Moses and his friend Isaac (we understood theirs a bit better than they understood ours, although understanding did not predict victory), we set off by moonlight for the video hall to watch the Euro 2012 final. The ramshackle little room was packed; we had thought 45 minutes in advance was plenty. Fortunately, though embarrassingly, plastic chairs were reserved for us at the front beneath the TV screens, along with another important guest. Other patrons were crammed onto benches and the floor. We picked our way through the crowd, greeted our neighbours and waited for the game, while my new worst film ever was finishing on one screen. It was a raucous night. It was also much later than we had been used to staying up. Some customers were the worse for drink. Opinions were exchanged loudly and repetitively, some directly into my right ear. Goals were celebrated energetically. Still, we thoroughly enjoyed Spain’s comprehensive demolition of Italy. One or two people lapsed into unconsciousness, slightly reducing the noise level. Even an entomologist would have enjoyed what was happening on the screen as various interesting insects were displayed.

After the award of trophies we returned to the guest house for the night, ready to resume research activities on Monday.

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.