of Mice and Men

When you think about a visit to overseas projects you dream a bit about what you might hope to achieve but you know that a lot is out of your control. So when you make plans and set yourself goals and targets, you know that Providence as well as your own efforts will play a part in determining whether you succeed. And of course, besides the plans that are finally fulfilled or unfulfilled, there are unforeseen things that can happen, both good and bad.

Yesterday we set off to Abeko to visit the Disability Support Group that is now well established and getting into its stride with projects including the informal loans scheme, bee keeping, poultry and goat keeping, skills training and disability playscheme. They are a new group who do not have a lot of experience in business, so one aim is to review their accounts, systems and reporting to ensure that they can make the best use of resources and avoid costly errors. In order to set up a meeting like this I had to negotiate by phone from home with David in Uganda, hampered by the difference between UK and Ugandan English and the lack of a shared vocabulary for business matters. Then David has to communicate what he thinks we agreed in the Ateso language with the DSG team.

So naturally you arrive on site, a bit travel sick and delayed by the wet conditions and the broken bridge and there is a different set of people that you don’t necessarily need to spend time with and the documents you hoped to review aren’t there, if they even exist, and the ones that are there are not easy to understand, and there are lots of people waiting about that probably want to interact with you, and some people have to give speeches, and someone couldn’t get there because of a funeral and some others are missing because of the broken bridge and you don’t know if you are being rude and unreasonable in what you are asking for, or if you are being told what people think you want to hear. You go around and visit some sites and come back to review documents and talk. What you want to find out is quite complex and you won’t fully grasp whether you have everything you need until you check through it later. Then thunder is heard and we are told we have to go because the makeshift road that bypasses the broken bridge will soon become impassable when the rain comes. But first we are to eat the meal that has been prepared for us. Rain starts while we are still eating and I bolt down the last of the chicken before running out of the door, apologising to people who wanted to see us today.


On reviewing our data and drafting a report, we have nearly everything we need, thanks to good teamwork, and we know what we need to find out on our return visit on Friday, when we will concentrate on the playscheme.

And as ever the real heroes of this story are the people on the ground; local staff certainly, but even more so the Abeko community members. They have risked a lot on this project, mainly in hope of helping disabled children in their households and community. For us, if this project fails, we can put it down as a learning experience and move on. But they are making a significant investment of time and a big portion of their limited financial resources, without the assurance of any return at all. We are inspired and humbled by the boldness of their response to the challenges these families face, and proud to stand with them.

Bob the Mouse kept quiet yesterday. Probably he was thinking of the Burns poem referenced in the title and praying that these schemes don’t “gang agley”*.

*I am quoting from the 1785 Robert Burns poem in Scots “To a Mouse (On Turning Her Up in her Nest with the Plough)”, which includes the line ‘the best-laid schemes o' mice an' men gang aft agley’ – meaning they often go wrong. It ends thus:

But Mousie, thou art no thy lane,
In proving foresight may be vain:
The best-laid schemes o’ Mice an’ Men
Gang aft agley,
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

Still thou are blest, compared wi’ me!
The present only toucheth thee:
But Och! I backward cast my e’e,
On prospects drear!
An’ forward, tho’ I cannot see,
I guess an’ fear!

Awakening hope

We have endured a few difficulties on our trip. We dropped our laptop, resulting in an unsightly kink at the corner. We have been bitten by sundry insects, sweltered on long car journeys, got soaking wet once, missed meals, and both suffered from an excess of visits to the toilet.

On the other hand, Martin, whose legs have never worked, has no money to replace the tyres on his hand-tricycle, or to repair the thatch on his hut as the rainy season begins. And at least two disabled children have died recently because families don’t know how to care for them, the nearest reasonable medical care is two hours on a motorbike and they can afford neither the journey nor the treatment, even supposing they get the right advice. The village health centre has no staff or drugs. I could tell a dozen stories like this.

The people we have been meeting the last couple of days are doubly forgotten. Their remote rural community is near the boundary of two districts and neither seems interested. Virtually everyone is struggling to get by, depleted by recent drought (climate change) on top of the neglect. They cultivate a little plot, cut wood to sell, try to get some work in an area with no real employment opportunities apart from casual labour. But for families living with disability it is much worse as they have more expenses and less income than others, less ability to do for themselves, and this community traditionally has not treated them as fully human. Hardly any have been to school, or remained there long enough to gain useful knowledge. Even in church they are not fully included and some parents seem to feel it is more important to turn up themselves in their best clothes, than to take their disabled child.

However we are really excited with the signs of change. Today in Soroti the dry season is coming to an end with a decent thunderstorm, and it feels like the days of drought could be numbered.

A couple of years ago, one of the Global Care managers (and heroes), Oumo David, raised his concerns about the needs of this community and wondered if we could support them to create a Disability Support Group, as we did seven years ago in a village called Atiira, at the other end of the district. Encouraged by the UK leaders and us, he convened meetings, helped draw up a constitution and get leaders elected and the group registered. We visited last January to witness part of this process and were struck by how needy the area is. Dirt poor doesn’t really do it justice.

In the last two days we have been repeatedly bowled over, reduced to tears, and astonished at what people were saying. Their eyes have been opened to the fact that disabled people including the most disabled children, are human beings with the same basic needs and rights as everyone. They mention God quite a lot when discussing this. They are prepared to put their money where their mouth is by contributing a little from their meagre resources each month, in order to help one another but mostly the children. This has enabled them to provide emergency relief for medical needs and education requirements and a business loan so someone can support his family. They volunteer in official and serving roles, staffing a playscheme that brings formerly isolated children together to play and share a meal. The changes in these kids in a few weeks can hardly be believed.

By stepping up and taking responsibility for what is going on in their community, the DSG members have moved others to become partners with them. The school is providing space for the playscheme, the local council provided some mats and we were taken to see new beehives hung in the mango trees that will provide honey to sell. There is a new poultry house as well, though we seem to have escaped without being asked to help vaccinate the chickens (we have mixed feelings about this).

These are really early days for this group and there will be a lot more loss and tragedy here before things improve substantially. There are too many entrenched issues to expect quick solutions. But David’s initiative has changed the outlook. Now we need a few friends to get alongside these brave people. When we left today we found they had put a jack fruit, some huge avocados and a big bag of peanuts in the car. Generosity of spirit like this deserves to be honoured.

Journey mercies and the dogs’ choir

Over the last two days we travelled from Lake Mburo Park in the west of Uganda, to Soroti in the north-east. Ugandans often wish you "journey mercies" when you set off and give thanks for them when you arrive. Since on the journey we passed three recent accident scenes, at least two of them fatal, you can see why. A minibus taxi with the front smashed in. As these only travel when they are full, the carnage must have been fearful. Three big trucks tumbled in the ditch by the road. If the drivers were wearing their seatbelts, I think they could have survived. And after waiting in a long queue to pass vehicles stopped in the road, we could see the feet of someone laid out in the back of the police pick-up. When you know something about emergency services and hospital treatments here, this kind of thing becomes even more intimidating. Accidents? Perhaps. But when you look at the old vehicles on the roads here, many puffing out black smoke, and the quality of the roads with few safety features apart from speed bumps, you realise this too is connected to poverty and poor governance. Charles our driver agreed that old vehicles that have reached the end of their useful life in “developed” countries are all that most people can afford. And that the system of annual vehicle checks (like UK MOT tests) has been abandoned as it was not working. So you have badly trained drivers in badly maintained old vehicles on a road system that is improving but still lacks most of the safety features we take for granted. No surprise that there is a high fatality rate. Police stopped us, making checks, but it is not always clear whether they are looking to enforce safety regulations or collect money from drivers.

So it was with a sense of relief that we arrived at the Global Care Centre in Soroti and walked into the familiar building. The offices were empty so we continued down the corridor to The Ark disability centre. “You are welcome Dr Tom!” Warm greetings from the staff giving the children their lunch. We greeted some familiar children and some unfamiliar new ones. Despite the new bunting the place seemed a little less bright somehow. I realised that someone was missing. A little girl that means a lot to me has gone …. to school! She doesn’t speak and most of her limbs hardly work but she is bright as a button and is reportedly doing really well, though we will need some additional funds to support her classroom assistant etc. Her smile is lighting up another room and we are all delighted. These successes are what we work for. To know more, or to help, go to  https://www.globalcare.org/project/the-ark/ 

Here in Soroti we look forward to the week’s programme, more details to follow.

And the dogs’ choir? At last night’s little hotel in Mukono, we were entertained by their singing mingling with the weird noises of Marabou Storks and local pop music. Unexpected talents are everywhere in this country!

Patti and the pigs

You drive for an hour out of town.
It’s a hot day but the scenery is spectacular with field and woods, valleys and steep hills, children waving and calling, scattered houses and villages, roadside markets, goats, cattle, businesses. Trees you can’t name, with flowers and fruit, rows of tall eucalyptus. And always the red dust from the dirt road.
The driver goes fast, sometimes it feels too fast, but he slows for the bends and bumps and there are no accidents, though there is a clanking in the rear suspension that will require a visit to the garage tonight.
Eventually the ancient Toyota minivan  stops, several hundred metres further down the dwindling track than you thought was wise, or even possible, and it is time to walk. Soon you are on a steep uphill path. You worry vaguely about snakes, more about slipping and falling. Passing plantain trees, cassava and coffee bushes you reach the top of the hill where there is a well built rectangular mud and wattle home with a corrugated iron roof. Chickens ducks and pigs scratch about as you slowly approach. Polite greetings are exchanged and you enter the house and sit on a wooden bench. You wonder if you should lean against the mud wall.
On the dirt floor sits a smiling plump girl finishing her lunch from a bowl – she is eating pieces of cassava with her hands. Her clothes are grimy. She is four years old and we have come to discuss her going to school. A lady breast feeds a smaller child, another sits on the bench beside me and doesn’t say much.
Why have we gone to all this trouble for one girl to get to school? Because Patricia (not her real name) was born with spina bifida and following surgery her left leg is paralysed and numb. She moves by shuffling on the dirt floor and cannot use the locally made crutches that her parents got for her. It is impressive that her siblings and neighbours walk over 3 km to their local primary school in such terrain, many of them barefoot. It is very hard to imagine how Patricia could make the trip. Motorcycle taxis seem to reach most places round here, but this route would challenge a professional trail rider. And how can she get treatment when the nearest suitable hospital is about 80 km away?
We, we did ask the question so we will have to try to come up with some answers. First we will see if we can get her off the floor and get the huge ulcer on her knee to heal. Then establish how she can move about and see about helping the school get ready to receive her. She will need transport walking aids and a an accessible latrine, something in which we are becoming expert.
It’s been a tiring day for me, but this is someone’s life. Leave no one behind!

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.