Sinister, Dexter, Sinister, Dexter, leave no one behind

Would you rather be sinister or dextrous?

I write with my left hand. This has caused a few problems for me. Writing from left to right, it is easy to smudge. Left-handers adopt curious pen grips and writing techniques to avoid this, leading to cramps and dodgy handwriting. Scissors are made for right hand use, so we have to grip them differently to get a clean cut. Other tools are similar, though I am not so markedly left handed that I need left handed tools for most jobs, and I play musical instruments and ball sports using the same grip as a right hander. As we are only 10% of the population, the world is not designed for us.

Rather more annoyingly, there are some common phrases and concepts in English, and other languages, that stigmatise left handed people. Dexter is Latin for right, so value is linked to being dextrous and right-handed (as the word right suggests), whilst sinister is Latin for left, and evil or deviant connotations attach to being left handed in many cultures. “Cack-handed” is a particularly egregious one, possibly referring to the left hand being used for cleaning oneself, and meaning that one is clumsy and perhaps unclean. Having two left feet is similar. Being brought up Catholic, I was also referred to as a left-hander in that context. Having a natural attribute that could be used as an insult makes me uncomfortable or angry.

Reflecting on this, I remembered how Francis, a disabled people’s representative in Uganda, argued at a meeting I attended that in schools, a percentage of desks should be adapted for children with disabilities, and others for left handed children. And I realised that I had experienced, in a very small way, some of what my disabled brothers and sisters do. They also inhabit a world that is not designed for them and experience prejudice and stigma, which is even embedded in the language they all must use. There is no escaping the fact that they are second class citizens in every way, even in many cases in their own families, and at the back of the queue for virtually all social entitlements that everyone else takes for granted. This helps me to feel even more solidarity with them, though of course I am far from claiming parity of disadvantage. (I attended a University that the TES currently ranks second in the world, behind one that we don’t mention, had amazing jobs, a nice home, good family life……). It does cost a bit of trouble and money to make structures and institutions inclusive for everyone; to provide wheelchair access, sign language interpreters, autism friendly events, sport opportunities for people with intellectual disability, Braille signage, etc., and to think about the language we use. But failure to do this means that we are saying “you are less than us” and by not including all of us in the human race, we are so much diminished. It’s loads better and more fun with everyone included!

I pick it for you from down

Uganda has over forty indigenous languages, but, largely for internal political reasons, none of them is an official national language. Instead the colonial language, English, and an East African lingua franca, Kiswahili, are officially used and there is a Ugandan Sign Language. English in Uganda, though is not always instantly recognised by those from the home country. This is because it is influenced by the forms of Ugandan languages.

The first aspect of this that I got hold of, helped by having learned a smattering of some other languages including Arabic and Kiswahili, is the phrasing of questions. In UK English we might ask “Did you go to school today?” This usually prompts a blank look, until you remember to just make a statement with a questioning intonation – “You went to school today?”. When we go for a little walk, countless young men on motorcycles pull up alongside and say “We go?”. They are boda-boda (motorcycle taxi) riders and I do not recommend accepting, especially in Kampala traffic as the mortality rate is high. Incidentally “boda-boda” is thought to come from the origin of the motorcycle taxi in the border town of Busia, as the riders would call “Border, border” to indicate the likely destination to potential passengers.

“You pray where?” means where do you go to church?

A “short call” is the briefer sort of visit to the lavatory.

If something amiss happens, or you say you don’t feel well, your companion will say “sorry, sorry”, to express regret at your situation, not as we would, to take responsibility for it. In a similar way, you may be congratulated with “well done” on any minor achievement.

Preparing a project with people involves mobilising and sensitising them, roughly equivalent to publicity/recruitment and education.

Pronunciation often varies markedly, and suggests that words have been learned from written rather than spoken sources. “Clothes” is often pronounced “clo-thEs”. Depending on the speaker’s origin, Ls and Rs can be similar or even interchanged and K can sound like CH. And adjacent consonants often find themselves separated by a 'helping vowel'. There's more information on the Wikipedia page on Ugandan English.

Family relations are different, society is patrilineal and there are different degrees of affinity between cousins whose parents are brothers and those whose parents are sisters, so “nephew” or “niece” is not an adequate description. So Caroline was more precisely identified as Barbara's sister's daughter. However, adults may be called “Uncle, Auntie” by any child or young person, and we are now sometimes called Mama or Papa by less elderly adults.

“Eating money” usually means corruption, embezzlement. 

“OK please” shows agreement. “Please” is not used as we do, when requesting something, Ugandan English is more direct here “You give me money”!

It’s not surprising we sometimes struggle to be understood.

Can you work out what the blog title means? “Pick” usually means something like “Get”.

It really isn't

#disabilityisnotinability

I’m very excited writing this; for me it was a spectacular day. We went back to the dusty mud brick Abeko Baptist Church, seemingly in the middle of nowhere. While we were meeting, Charles and Fred changed a tyre that had been punctured by a thorn. Sun beating down on the thatched roof, a gentle breeze making the heat more bearable. Slowly, the executive members appeared, some sweating from the exertion of their travels, one lady with a cannula in her hand as she was still being treated at the health centre. Men and boys sat on home made wooden benches and chairs, ladies on mats and cloths on the floor, some with babies at the breast.

I had belatedly remembered that we should have included an official representative of people with disability in the discussions and fortunately Francis was available to travel with us. He is an elected member for the region to a national council on disability, and his contribution took the meeting to another level of insight and effectiveness. First we had the required courtesies and introductions, prayers and expressions of thanks and hope. The chairman explained the genesis of the group, how they had decided to engage local cell representatives who, though not themselves disabled, had experience as community mobilisers working with Global Care. The parish is very rural and covers a large area so the local presence makes a lot of sense. Francis was impressed with the constitution David has drawn up, based on that at Atiira DSG, only making a couple of recommendations, especially the need to include formal representation of women and youth.

We spent some time as a group considering the needs that had been shared on Tuesday. People were able to give their opinions about the priority of education compared to meeting care needs or increasing household income. Someone pointed out that disabled people were sleeping in the open without shelter because they were physically unable to build their own homes. Of course they don’t have enough money to pay someone else to do the work. Children easily become discouraged from attending school if they are mocked by their peers, though they were encouraged to persevere by Francis. Through this discussion we got a better idea of how the group could work together on a strategy. I was also impressed that, while the group is thankful to Global Care for supporting the set up process, they do not intend to be dependent on continuing funding from them, but to develop a range of income streams including their own subscriptions. Mechanisms are also being put in place for proper recording of financial transactions, guided by the Village Savings officials.

Francis spoke then from his experience of the political world. He said that it was all very well to complain that their interests were neglected by politicians, but this is their opportunity to participate in the political and resource allocation process. He went on to explain that as a legally registered community group, they would be in line to receive funding when local government budgets were allocated. He even explained about the annual funding cycle and when they need to be ready with their plans. He explored other relevant topics. I was getting a bit weary, but the group was so attentive, and afterwards expressed their amazement at the knowledge that he was sharing with them. As we hoped, they felt empowered but also recognized their need for further training.

For me the experience confirmed that it is vital that these topics are addressed whenever possible by disabled persons themselves. Aside from the fact that Francis has far more experience and knowledge than any of the GC team, the fact that he is himself disabled and yet moves in these circles is so encouraging to these people in the village. He told them a story of a woman who was denied a bed at the Hospital, until he turned up in the office and mentioned that he could easily call the national TV programme to report on the issue, when suddenly two doctors appeared. So thanks and credit to him for being prepared to trek out into the country with us to support this group.

After the meeting we shared posho, rice, chicken, pork, and vegetables with our new friends, took a group photo and set off back to town. People on foot, on bikes and motorcycles, some carrying water from the various boreholes, all have to move aside as Charles hurls the Toyota down the dirt track, occasionally slowing down for a few cows, an extra bumpy bit of track, or a boda-boda driver who doesn’t want to give way. It scares me, but he has never been known to have an accident. We return Francis to his wife and family and Charles drops us at the hotel and goes off to get the tyre mended.

Next, we have been invited to Fred and Viola’s for a meal. This is a wonderful couple and we are so blessed to be their friends. Sadly this is our goodbye to them as we are leaving town on Monday.

A matter of life and death (again)

Today we were mostly busy around the Global Care Children’s Centre in Soroti. The team are still bubbling with ideas to improve the lot of vulnerable children, and are prepared to sit down and toil over the planning process, so we had plenty of work to do.

After saying good bye, we went to visit another centre that works for children in Soroti. Amecet N’ainapakin (Shelter of Peace) is home to a team that basically saves babies. Today, for example, they took in three new little ones, two whose mothers had died in childbirth, and one whose mother had survived but was mentally incapable, the baby had been fed only on sugar water for three weeks and was in a very weak state. The babies’ room that we visited was quite full with tiny people in cots and we tried to help soothe some, feeling rather overwhelmed. The sight of a very weak malnourished infant in the nursing room was very sad; if she doesn’t take milk better soon, she might need tube feeding for a while.

Kind friends from home in Yorkshire had made a large number of quilts for the babies’ cots and we took great pleasure in delivering them, and seeing Els’s delight. The quilts will help keep them warm and comfortable whilst they receive nursing care. Babies are usually sent home after a few weeks and often the quilt is sent with them, this can be helpful especially when the family has few resources, and it may make it easier to cope when the child may not even be their own.

Els and the team also receive children taken from abusive situations by the police, and they visit children in the local prison and take in regular supplies to supplement their diet. They are supposed to be sent home at the age of two but this is not always achieved so they have helped secure nursery school places for those who must stay longer.

I recommend the Amecet blog at amecet-soroti.blogspot.ug to learn more about this brilliant place. I feel privileged to know it.

Looking back on the week, I feel we have achieved a lot but the biggest new thing might be still to come as we go back to Abeko to work with the new disability support group there. Watch this space tomorrow!

No-one left behind

Today we visited the severely disabled children who were recently discharged from the Ark. There are more details over on darton2soroti.blogspot but here I want to say that I was relieved to find that the families were coping, some better than others, and that they were thankful for the light that the Ark project had brought into their lives. Again and again we hear that the projects with people with disabilities have a profound effect that is not easy to describe. I think it has to do with showing that each person has value, no matter what their condition. We do this by listening to people, treating them with respect, allowing them to determine what their needs are and how they can best be met, and offering assistance sensitively when we can. We cannot solve every problem, but we can stand with people, hear their story and find a way to show that we care. (The problem of how able-bodied society treats people who are different is not unique to low income countries, as the rise in “disability hate crime” in the UK tells us.) It was lovely to peer into a tiny hut and see a little girl with cerebral palsy being fed lovingly by her sister, enter a compound to find a boy in a chair playing with his sister, go to a nice little house and see a mother cradle her teenaged son while reflecting on the difficult decisions she has to make every day and the physical labour of caring for him. We just need to see a few more men getting involved!

We visited a school where the team have enrolled a boy who uses a wheelchair. They saw that his classmates and brother had to lug the chair up steps to get into the class rooms. So now the school is equipped with ramps and even a sort of accessible toilet (not perfect, but a step in the right direction).

Aside from disability, Global Care Uganda staff try every way they can to enable each sponsored child to succeed. For most, that means getting as far as they can within the national school system. They receive support to stay at school until S4, and achieve results similar to our O levels. Because of delays and interruptions to schooling, often before they were sponsored, they may be well into young adulthood by the time they complete school education. I have been in a primary school lesson and have never forgotten the overcrowded room, children two or more to a desk trying to follow a lesson on the blackboard that was over the heads of so many of them. So I have no illusions about the quality of schooling that many children receive in the name of universal primary education.

Sponsored children are selected from the most needy, therefore they tend to come from families that are poor and uneducated, and many have experienced disruption, trauma, illness or malnutrition in early life. All of this has an impact on their academic achievement, and the school system is very focused on passing exams. Therefore there is a group of children who are seen to be failing in school. Or, as one of our workers puts it, they are gifted in different ways.

So the dilemma has been, do we support these children through secondary school, or offer alternative vocational training, which may give them more chance of gainful employment?

Today we met some boys who have chosen training placements in Soroti. Global Care pays businesses to train them, instead of paying school fees. They are all teenagers, and the placements had to be cleared with the local police, to ensure that they did not fall foul of child labour laws. We walked in the hot sun down a street that was under repair. I wished I had anticipated the walk and brought my hat. Bleeping noises from a road grading machine reversing, even more red dust than usual. Along the road a series of sizeable buildings housing businesses like carpentry shops, metalwork shops and car service centres. Young men sweating in overalls, sparks flying from angle grinders, flash of arc welders, guys lying under cars propped up on blocks wrestling with wrenches.

It seems unusual to have a thirteen year old training as a metalworker. Already he can fabricate doors and similar structures, using welding equipment. He is enthusiastic about the experience, and has been assured of continuing employment within the business. For some of the other boys, training for example as car mechanics, the future did not seem quite so clear. We will continue to monitor progress and learn from successes in the other Ugandan project areas to ensure that the training is fit for purpose and the transition to paid work is managed well. We are excited about this programme as it offers a route to self sufficiency for these students.

We spent the afternoon considering plans to help the Atiira Disability Support Group with an income generating project involving a maize grinding mill. It seems good but we didn’t know enough facts about the financial aspects to be able to recommend it yet. Nevertheless we spent a joyful hour or two on a business plan and log frame!

It has been a very positive day, even if we ended it with as many questions as we started with, as usual.

The Ark wasn’t built in a day

 Today has been hot and dry. We did some teaching and brain work, but I have left Barbara to describe that over on darton2soroti.blogspot. I want to tell you about the Ark day centre for children with disabilities. This place is probably unique in what it is trying to do and we wanted to see how well it is succeeding.

Today two staff were working, one is on leave. There were six children present, some others are staying out of town during the school holidays. We had a look at the records that are kept to show the progress the children make. Actually, the outcomes recorded are pretty remarkable. Most of the children have severe and complex disabilities, like the little girl with severe visual impairment, weakness and spasticity of all four limbs and minimal ability to communicate in any way. She can now stand using a frame for half an hour and sit comfortably in a chair, but the biggest change is that she now appears a calm and contented child in contrast to the girl who used to strike and bite herself incessantly. Other gains by the children are the ability to communicate, to feed themselves and be continent. Most impressive was the sense of calm and purpose in the centre, where it used to feel quite stressful.  Lucy and Ida sat peacefully in the outside shelter providing therapy to contracted limbs and joints, education and play simultaneously without any fuss, only occasionally jumping up to sprint and retrieve an escaper. It is clear that they love their work and the children.

Adjustments are being made; some children have been discharged for home care (we plan to visit them to check on their welfare before we leave) and there will be more focus on helping children access education. The system of regular visits from the physiotherapist seems to be working well. The physio shows the staff and the families how to help the children and administer the therapy. We can improve on the record keeping, giving a clearer focus on the achievement of therapeutic goals.

In my experience, care for disabled children here is very difficult to achieve for the following reasons:

·         Lack of resources generally – families’ and helping agencies’ budgets are under strain and these children are often more costly to care for than others.

·         Lack of appreciation of the human rights of the disabled: though Uganda has exemplary laws about this, they often fail in implementation as many people do not want to divert scarce resources to this.

·         Lack of expertise, the poor state of healthcare, loss of professionals from state health services through competition from the private sector and overseas recruitment. This leads to families wasting a lot of their income and selling assets for ill-advised attempts at cure, while others who could benefit from treatment cannot access it due to lack of knowledge or finance, especially those who live far from centres of excellence.

The Ark and the disability support groups, alongside many other indigenous and transnational organisations, can work to mitigate this, but ultimately it comes down to political will and here we can look to raising awareness of the issue, and empowering the political representatives of people with disabilities to better represent their interest.

I can’t help being disturbed by what we see here, though I’m not the one who has to live with it, but it is great to be involved with this organisation that knows that you can’t do everything, you mustn’t do nothing and you can do something. Sometimes by God’s grace, it’s more than you thought it would be!

The Arch-Angel Thomas

You may not have heard of the celestial being whose name forms the title of this blog entry, but according to many people, he definitely exists. By their account, he came into their village school one day, sent by God and bringing a plan for their salvation. They now honour him for transforming their lives and their prospects. These people are members of the Atiira Disability Support Group. I am only exaggerating a little.

My version is more like this: Dr Tom was trying to apply the little knowledge he had gained about participatory action research to the situation of disabled people around Soroti, encouraged by Global Care staff. Thanks to the help received from people like Richard, the head teacher of Atiira Primary School, himself disabled, I was able to complete data gathering quite quickly. So I decided to feed back the information to the participants, following good practice in this kind of work. To my surprise they decided on the spot to set up a disability support group and it has gone from strength to strength. Some support and guidance from Global Care and from Richard has helped avoid the pitfalls, and some regular finance has supplemented their efforts. Really though, it is the willingness of the ordinary members, mostly very poor and uneducated, to trust one another, invest their own resources, pool risks, and focus efforts on the most needy, that is starting to lift them out of destitution. So today we were able to hear about a home built for a desperate family, wheelchairs provided, enterprise loans, and livestock distribution that transforms the prospects for families. Soon they hope to obtain a maize mill, so that local people can get their corn ground and the group can earn some cash. They have also been able to help the new group in Abeko about which I wrote yesterday.

One lady, for whom the new house was built, is still facing problems as she doesn’t have access to any land to grow crops to feed her severely disabled boy. Though not a young woman, she had even tried breaking rocks to earn some cash. We were able to suggest that she apply to the group for a micro-loan to do some trading. This is a good example of how the group can operate for the benefit of members, without them having to rely on handouts.

So, maybe it was God’s plan and timing, and the results are praiseworthy, but I’ll not put on any wings just yet. Meanwhile here is a proper angel for you.

A day of hope

It was not until after I returned to the hotel and we were praying for the people we met today that I shed a tear.

We had driven out to a remote settlement in Amuria District to meet members of the nascent Disability Support Group that is forming with help from the Global Care team. Already they have formed 5 local cells and elected a committee. David says they are gaining confidence and the ability to talk about their lives and their needs and ideas for how to tackle things. Rather than lecture them on the way forward, we decided to use the time to interact and work together towards a consensus.

My plans for three focus groups and a participatory workshop took a backward step in the face of a hot mud-brick-and-thatch little church, crowded with men, women and children. Still, we managed to get nearly everyone to speak and tell something about the challenges they face in this, probably the most rural area I have ever visited, where there is practically nothing to do except subsistence agriculture. Understandably there was much focus on poverty and the near impossibility for most people of generating enough income or crops to feed their families, due to lack of access to land and the impairments they have. Add to this additional costs for care needs, aids and medical interventions (many of them futile and accompanied by long journeys), along with exclusion from education and participation in village life and you have the familiar fundamental reasons why disability is so closely associated with poverty. 

We have some experience of how a support group can work against stigma and exclusion, support its members in income generating projects, raise its own funds from microfinance schemes and subscriptions, and attract grants from Government and donors. Perhaps most importantly, it can help them believe in their own capacity and worth.

So, whilst gently deflecting a few direct requests for help with medical costs etc., we trust that we were able to support the direction of travel and raise hopes that will not be in vain. How, in this out-of-the-way place, they will be able to create alternative livelihoods and generate funds to help with buying wheelchairs and operations, is beyond our understanding at present, but with faith and perseverance, we want to travel with them.

It's not about You!

We are in Uganda for a short visit, but for a change we have started gently by arriving on Thursday. Friday we had a planning meeting with the team leaders here in Soroti, but it was the Liberation Day public holiday so we weren’t able to do much. Saturday we went to a wedding, Sunday to church and to a swimming pool! Unheard-of relaxation in Soroti. After initial discomfort from our misplaced work ethic, I think this has been good. It gives us a chance to re-acclimatise and recover from the journey, to tune our ears into local accents and rhythms of speech, remember a few words of Ateso and even Uganda Sign Language. And to remember that this trip is not about us. IT’S NOT ABOUT US.

We’re visiting our friends at Global Care here again. Increasingly we are learning to respect them and their knowledge and planning. They understand the culture here and the things that threaten the lives and wellbeing of vulnerable children. They have experience of what works and what doesn’t. We’re very happy to follow their lead, with some guidance from the UK team. We on the other hand, do have some knowledge and skills to share. We understand what is asked of a charity seeking to attract corporate funding in Europe, and how the requirements to evaluate and demonstrate impact can be met, and even used to improve what we do as a charity in the field. We have some knowledge of encouraging participation from groups of people and some IT and business skills to share. So tomorrow we get down to work.

Keep following this and darton2soroti.blogspot to see how we get on with the new disability support group at Abeko, which has now elected its officers, with the old DSG at Atiira, with reviewing the children discharged from the Ark centre for children with disability, tackling the nappy crisis and the dangerous bolts situation, and with working with the managers here to apply for funding for some new initiatives. Looks like being a busy week!

Sorry for the lack of pictures, technical issues. Look on Facebook!