Elephants and chips

Waiting for our flight to board in Entebbe is a time for reflection on the last eighteen days. Through the fog of fatigue there are a few things that stand out:

A little girl, severely handicapped, grinning with delight when we realised she was saying our names.

A man almost too desperate and crushed even to weep at his inability to provide care for his profoundly disabled and stunted daughter.

A vibrant group of positive people meeting under a mango tree in the school compound to celebrate their achievements in supporting one another with help from Global Care.

A beaming rotund nun displaying just the right mix of protection and empowerment towards the blind and partially sighted children she was sent to serve as head teacher.

A girl of about ten years old, with joint and spine deformities, who does not attend school because if she falls on the way there, she can’t get up again without help, and no-one seems to be willing and able to help her.

A young lady who was delighted with her micro-finance loan (worth £7.50) from the disability support group, having used it to buy cassava roots, which she cooked and sold as chips for a profit.

A bright little girl rapidly solving a jigsaw puzzle, and having a great time teasing me by throwing or not throwing a beanbag, using the one limb that seems to work. She communicates quite well by gestures; we don’t yet know why she doesn’t speak.

A boy who loves to be raced and spun around in his chair, making motor car noises, receiving great love and encouragement from the volunteers.

An educated young woman in prison, telling us that she thought she would be a better person for it, despite sleeping on the floor in a cramped hut with 9 other women and a toddler.

Seeing elephants and hippos in Queen Elizabeth Park.

Kisiizi Hospital; premature babies in incubators, orthopaedic traction improvised from paint tins, a drum calling the staff to prayers, a hydro-electric plant, a psychiatric ward, a rehabilitation department. The beds that are empty because the disease affecting the plantain crop means people can’t afford to go to hospital.

Being taught how to say “lion” “zebra” “elephant” and “giraffe” in sign language by some children at Ngora school for the deaf, when we showed them finger puppets.

Being amazed as blind children explained how they used templates and styluses, or Braille writers, to do their lessons. When the school can afford the paper, that is.

One big question is – what is the reach of the services we have seen - how many families with disability are benefiting, compared to the level of need? The available ones are not comprehensive or joined up; they are doing the best they can to meet needs but are limited by their own skills and resources and the intentions of those who fund them. Services are patchy, of variable quality, some, like our new centre, a bit amateurish in some ways as we find our feet. Most are subject to the vagaries of external funding, which is usually for a finite period, and doesn’t facilitate collaboration with other services. I’m sure all those I have seen are doing some good, but are not good enough or well enough distributed.

There are signs that the international community is putting more resources into overcoming the detrimental effects of disability. If this can help and provoke countries like Uganda into actually putting their commitments into effect, then there may be some hope that a decent package of services, along with the work of disabled people’s organisations and changing the physical and cultural environment, will lead to a fuller inclusion in society.

Thanks for reading and sharing the blogs from this trip. We will try to update when further information is available.

Disability is not inability

This was another day rich with exciting and challenging experiences. I guess you might expect that if you visit a school for the blind and another for the deaf in poverty-stricken parts.

We just had a short time with some of the children in the Global Care disability centre this morning. After only a few days’ acquaintance their responses to us have changed; we have discovered some of the things they like to do and ways to challenge them, and as Barbara has written in http://darton2soroti.blogspot.com, one girl whom we hardly realised could speak managed to say “Barbara” quite clearly, others are greeting us in their own ways. We are pretty sad to think that, as they aren’t coming in tomorrow, we won’t see them again. That is, unless we find a way to return soon!

We have really enjoyed getting to know James and Hannah Harrison, the young couple volunteering here for six months. We are impressed with their willingness just to be here, but the way they are learning to be in the local community and culture and to serve to the best of their ability is a real blessing to everyone.

I met Emmanuel and Eseza at the school for the blind today. I was so pleased to be able to chat to them again and to tell them how their testimonies had been shared with others to let more people know of the plight of children with disability here. And it was moving to see and hear about the loving and empowering environment created here for children who have known such rejection and worse. The school is short of funds and resources are low so here is another area where help is needed if children with disabilities are going to get a fair chance at life.

We had a similar welcome at the school for the deaf, being taken round several classrooms to greet the children and try to chat a little. Specialist teachers are hard to recruit. Also, proper hearing testing and the provision of aids are the exception rather than the rule. If they were available, a good number of children could probably attend mainstream school and learn to speak. So it is rather heart-breaking to reflect on this. There is also a great need to teach families with young deaf children to use sign language, but again funds are not regularly available to support this work: donors tend to do it for a finite period, perhaps hoping that the Government will then live up to its responsibilities and provide comprehensive services to give deaf people equality.

We all realised how ignorant we were, as we watched how blind children learn to do Braille handwriting using a template and stylus (writing from right to left on the reverse side of the paper so when it is turned over it reads left to right) and seeing them using a Braille writer. Similarly, being taught a few words of Ugandan sign language by the deaf children was somewhat humbling. I do think more hearing people should learn to sign; I might have a go at it myself.A favourite phrase round here is "disability is not inability".

As we approach the end of our trip, and place orders with our son for our home-coming meal, fatigue mixes with our emotions and tumbling thoughts. We hope we can get our heads and hearts together and help to identify realistic priorities for action when we get back.

Disability Action Groups and an evil chicken

A great deal has been written about who should act and write about disability issues. I very much agree with those who argue that the primary right and responsibility to do this is for people with disabilities (PWD) themselves. I continue to hesitate before joining in with my own views and thoughts. In my work in this area, I have sought to assist the voice and agency of the people, rather than impose my own. Where PWD are able to conduct their own research and action, this is always preferable and others need to be very respectful of this if they participate.

Today we were asked to attend a meeting of the Pamba Disability Action Group. Okello Tom and I (we were referred to as “Tom squared” today) helped set it up last year, so I guess I was a midwife at its birth, but it was done on the initiative of the PWD and the caregivers of children with disabilities themselves. Another group we helped launch has gone from strength to strength, with over two hundred paid up members and active income generating projects, but this one seems to be struggling to get established, and may have made some unwise decisions. Certainly today the chairman admitted that their administration was not all it should have been. 

So it was a long and rather painful meeting under the mango tree at Pamba Pentecostal Assemblies of God church, not made any easier for us by having missed lunch after our morning visits (see darton2soroti.blogspot.com). One aim was to find common ground between the Global Care (GC) staff and the executive and members of the action group so that GC could go forward with supporting the group financially. Barbara and I with GC remain very committed to empowering the group and being partners with them in their action to improve the lives of people with disabilities. 

I anticipated when the groups started, that such challenges would arise with the nitty-gritty of constitutions, minutes, accounts, audits, memoranda of understanding and the like. Uganda does have a proper legal framework for community groups. I suppose the challenge is for the group to find its feet and gain trust from members, potential members and other stakeholders. Members have to pay a subscription equivalent to £5 to join, which won’t seem much to most readers but is a significant investment for a poor family, if they don’t have certainty that they will benefit from it. Benefits seem mainly to be conceived in terms of the ability to attract donor funding, which is understandable but I hope they also focus on the actions they can complete themselves or with local resources. I wish they could read my fellow student Rachael C Taylor’s blog on autochthonous action! http://rachaelctaylor.wordpress.com/2013/11/01/why-the-term-autochthonous-should-appear-more-in-development-writing/

 

I was very pleased near the end of the meeting when a tall and dignified older man arrived. I didn’t see how he got there; I wouldn’t be surprised if he materialised from the air like an angelic apparition. I was tentatively offering some advice at the time but was pleased to tell the group that their elected adviser had appeared. Pastor Joseph Engolu carries his authority very lightly, he listens a lot and doesn’t speak too much, seems gentle and kind and I have immense respect for him. He and his church were very helpful last year during my field work. 

After this uncomfortable afternoon and a quick snack (can’t call it lunch at 4pm) we were off again to Odongo Michael’s house (he’s one of the GC staff) to see him leading parachute games with the local urchins. There must have been at least 150 kids. Michael is a gifted communicator with children but even so at times it seemed like a modified riot. A thunderstorm intervened and we retreated indoors. A slightly aggressive hen was lurking by my chair but I escaped unscathed; dear reader I hope you are impressed by my fortitude.

Laughter and kindness

Today we spent a day with nine children who all had severe disabilities and many of whom have had these caused or compounded by severe neglect or abuse, often arising simply out of ignorance. Their families, where they have families, are amongst the poorest in this community, where poverty is the norm. Their biological impairments are at times augmented by negative attitudes and behaviour by members of their communities and families. Against this background it is perhaps surprising that my predominant impression of the day is of laughter.

One boy laughs if something is thrown on the floor near him. Since some of his fellows enjoy doing just that, he spent a considerable amount of time laughing. Others enjoyed simple fooling about, as children do, and one girl who doesn’t have much useful movement except in one arm, took great delight in throwing a bean bag for us to catch, at times teasing us by not throwing it, while other kids chuckled and giggled away when they could watch others interacting, or could manage to grasp and release the bean bag ball. I took over an hour to give a girl with athetoid CP her posho and beans, during which she grinned at me and tried to say her name to remind me to keep going when I got distracted.

Loving care and frequent bathing and changes of clothes by the attendant staff combine with their efforts to understand and meet the individual needs of the children. They try to ensure they are safe, that their bodies are helped to function as best they can, that they get adequate nutrition, and above all that they are treated with kindness as human beings.

I find myself agreeing with a speaker at the recent RCGP conference, John Ballatt, who was advocating the virtue of intelligent kindness. Kindness can sound weak but considered as an active virtue it is remarkably powerful. It means we attend to one another respectfully and become attuned to others’ way of communicating, building trust and therapeutic relationships, all of which I have witnessed today. Looking back over the last couple of weeks’ experience and indeed my last 18 months’ or so journey with childhood disability, I can see the power of kindness, resolutely and thoughtfully pursued in the face of prejudice, neglect and cruelty. It tells people they are worthwhile and valued, and encourages them to reach out to others. According to Ballatt, the English word is linked to the word “kin” or “kindred”, and is rooted in the fact that we are family. It reflects the kindness and mercy of our heavenly Father. Let’s keep working to multiply it!

Today we rose at 5.20, not very joyfully, and were driven to Kampala in just over six hours, which is pretty good time and about two hours less than the journey out. This afternoon we were fatigued, despite one of us having slept most of the journey, and we had a stroll around the Kabaka's (pea-soup-like) lake and adjacent slums and relaxed at the hotel, enjoying the wi-fi and swimming pool, if not the disco.
I am very thankful to have arrived safely as it's the road travel that frightens me most about coming here, and if you look at the statistics you will know why. Some of the roads are in good condition, though peppered with severe speed bumps, but many are poor. Sections of the road we travelled today, which is the main one to the south west and the borders with Congo and Rwanda, are very badly potholed, no doubt partly due to the heavy vehicles using. In many places the usable tarmac is down to a single lane, with dodgy verges that are driveable with care. In Uganda one drives on the left. Or the right if necessary, or the verge. Most overtaking takes place on the right. The official speed limit is 80kph, 50 in towns, but it is rarely observed. There were a few police with speed guns out today but in their white uniforms they are easily spotted at a distance. (The gecko over my head has just captured a dragonfly nearly as big as itself, so I got distracted then.) Anyway this arrangement of roads leads to a terrifying game of "chicken" being played as everyone tries to stay on the best bit of road as long as possible before swerving aside to avoid a collision. The long distance coach drivers however never swerve aside so everyone has to get out of their way, and they are going pretty quick. When they crash it really is carnage. When there are numerous bikers, cyclists (often with unwieldy loads), pedestrians (mostly children), cattle, goats, and indeed actual chickens using the road as well, it becomes alarming. Charles is a pretty good driver and I was more worried that we would hit one of these other road users than that we would come to harm, but as I say, we were thankful to have got here safely. Two more days driving to be done, on what we hear is a much worse road! In Kampala, there is near gridlock and the only rule of the road I can see is whoever gets there first has right of way. In Italy, traffic lights are merely advisory, here the few that there are, are just for decoration.
Tomorrow we get a lie-in until 6.30, we are being collected at 7.30 to go to Guiding Star school and meet those preparing for their leaving exams, no doubt say a word of encouragement and pray for them, before going to church with Gertrude.

Kisiizi Hospital

Today we went to Kisiizi Hospital. (We didn’t find out about the fighting at the DRC border about 60km away until we got back!) The main reason was to take a Global Care sponsored

boy there, who had been seen by the local doctor but was still unwell. I also wanted to see the place, as we’d heard how good it was locally, and because there is a big waterfall there.

Moses thought it would be a two-hour drive south so advised we should set off at 6, to be well-placed in the queue for treatment. So we were treated to a beautiful African sunrise and stunning hill scenery as we drove, initially along a tarmac road, and munched our take-away chapattis made for us last night. This road is called “Besigye’s Road” because the leader of the opposition made so much fuss about the roads in his district that the Government had to cave in and improve it. However, the area where his rather grand home is situated is one of the few round here not to have an electricity supply, so his neighbours are suffering with him for his politics. I digress. We turned on to a murram road, most of which was surprisingly good, though I have to say I would have slowed down more through the villages and my photos out of the window are all unusable due to shaking.

To our surprise the trip only took an hour and we were fourth in the queue at 7am. As nothing much was happening by 8 we left the lad waiting and followed the call of the drum to the morning service in the packed chapel, where we were introduced to the staff. African church singing in harmony accompanied only by drums and clapping is marvellous. We were warmly received in the hospital and chatted to a lot of people and we were jumped up the queue a little. Our patient was eventually seen and tested for HIV, brucellosis, anaemia and UTI. Meanwhile we were given a tour of the hospital by a supporter from the UK. It was better than I had seen elsewhere in Uganda, no suggestion of corruption, cleaner and more respect shown to patients. They manage to keep premature babies alive before 30w gestation, which is pretty good, and have a psychiatric ward, of which there are few in Africa. Barbara was impressed with the use of large paint tins to provide traction and lift the bed foot in the orthopaedic/surgical ward. Medical wards seemed to have some vacant beds and we were told that because the plantain crop locally was damaged by an outbreak of banana wilt bacteria, there were fewer patients because they couldn’t afford to attend. Several UK doctors and nurses were working there by various routes, and we saw some good work being done in rehabilitation, including the making of bespoke seating out of stiff cardboard reinforced by papier mache made with paste from cassava flour. We wondered if these skills could be disseminated more widely.

Back at the consulting room about 12 o’clock we found out that our boy was mildly anaemic and might have a peptic ulcer. I am not entirely sure we have got to the bottom of his problems but Moses will take him back if he doesn’t respond to initial treatment. We chatted to some expat staff over drinks and bananas in the staff room and went out for some snacks before walking across to the falls. It’s a 30m drop so quite impressive, despite some of the flow having been diverted to provide hydroelectric power to the hospital and surrounding communities. Apparently it used to be used to discipline young women who went astray, by tying their limbs and throwing them off the top to drown. We are assured this is no longer the case.

Chilli Children

I had a day off blogging yesterday. Once again we have all been everywhere together today, so please see Barbara’s at darton2soroti.blogspot.com for details of school visits. My highlight today was the visit to the North Kigezi Anglican Diocese offices to talk about their work with children with disabilities. They are wonderfully supported by another UK based Christian charity, which is called Chilli Children because one of the brilliant things they do is help poor families to grow chillies as a cash crop, which the project buys from the growers. We were generously given more than an hour to talk with the occupational therapist/manager, a lovely lady called Evas. She confirmed our impression that most people locally have very little understanding of the nature of various disabilities, she is the one who will assess them and advise on what kind of help they need, whether surgery, education on life skills, learning therapies to do at home, income generation, etc. When the project has enough funds it supports children to travel to hospital for any needed surgery. The nearest adequately equipped one is at Kisizi two hours away, where we plan to go tomorrow. However some children need to travel as far as Mbale, more like two days travelling, if they need major orthopaedic surgery or shunts for hydrocephalus. We do seem to have a lot of spina bifida, hydrocephalus and microcephaly in this district; it probably has a nutritional basis. Evas suggested ways in which Global Care and they could work together, which was really the purpose of our visit today, so we will have some ideas to put to GC when we get home.

It was quite noticeable in schools that we saw hundreds of children today but hardly any with a visible disability, though we met some deaf children. Access to school is very limited if you have problems getting about. There are few special needs teachers in the country and teachers generally are disgruntled and often not at work because their pay is too low to live on and they are trying to make money somewhere else; there is no enhancement for special needs and no incentive to come and work in remote areas.

Some of my readers know that I have a limited diet due to food intolerance / allergy, and while I hate to make a fuss about this here, I do try to stick to it or I will not be well enough to do what I have come for. As a result the last three evening meals have been chicken and cassava as the town has more or less run out of fish, which I was alternating previously. Mealtimes are enlivened by persistent harassment from an admittedly nice looking ginger cat. It has a remarkable tolerance for physical violence, I have discovered.

If you enjoy reading the blogs, please also visit GlobalCare site for more information and stories about Uganda and the other projects.