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!

When a refusal does not offend

What does quality in relief work look like? I was extremely surprised by an answer given by one of our partner organisations on a recent trip to Lebanon. Some days you learn something really important, when you think you are there to teach.

We were visiting the Bekaa Valley, an impoverished part of the great little country of Lebanon, wedged between Israel, Syria and the Mediterranean. Bekaa is inland from Beirut, behind the snow covered Lebanon mountains, towards the world’s most notorious trouble spot, Syria. Unsurprisingly, this fertile flat land is the first port of call for thousands of people fleeing trouble in Syria. Town names heard on the BBC News so often, like Homs, Aleppo, Raqqa, gain more meaning as you hear the stories of those who have picked up their children and left their homes in these indescribable disaster zones.

Most of the people in the camps have little money. Many were poor day workers in agriculture or construction, and uneducated. Most have several children, some of them born in the last few years, since they became refugees. Their wealthier compatriots have found more comfortable accommodation elsewhere. In Bekaa the landscape is dotted with tents and temporary shelters in large and small groups or in formal camps. Most consist of a wooden frame covered with thick plastic sheeting. Some are quite nicely furnished inside with cushions, fabric hangings and a stove.

Our partners in Lebanon are providing simple schools to help these children and their families. We spent a day visiting them, and also managed to call in on a couple of homes, where we were warmly welcomed with coffee and chat. We were able to take some photos but the people did not want these to be shared as there are many possible risks to being identified in this way.

Arabic lessons

The following day we met with leaders in the partner organisations to discuss the aims of the project. This was part of my task to help Global Care to evaluate the impact of its work and ensure that we get the most benefit for vulnerable children. By defining the aims and objectives, we would be able to determine whether we succeeded. So I asked everyone to say what outcomes would represent “success” for them.

Many of the answers were as expected – children can demonstrate that they have learned, they can help their parents when out shopping by reading the labels. Some were beyond what we hoped for – families function better by following the example provided, children are safeguarded from recruitment by extremists.

But the answer that surprised me most was the report that certain families had been able to say “no” to the relief workers when asked to receive visitors (maybe we were those visitors!). Our friend explained that this was a sign of an honest relationship between them and the beneficiaries. Maybe becoming a "refugee" means that you don't just lose your home, belongings, extended family, country and livelihood. Maybe you can even lose the sense of the ability to determine your own life or to control who comes in to your temporary shelter. And maybe, someone who shows that they respect you and believe in you can start to change that.

As well as being humbled by the depth of concern and insight shown by our partner, I was greatly encouraged to know the quality of people we are working with and the respect they have for the people they serve so faithfully. More power to them!

If you would like to help Global Care continue this work for desperate families and vulnerable children, please go here: https://www.globalcare.org/projects/20

A surprising meeting

We all know that meetings can be annoying. However much the instigators try to give them an exciting flavour, they are often tedious and fail to achieve very much. So it was partly with a sense of duty to be done that we approached the Lweza centre near Entebbe on Tuesday afternoon, to join the Global Care Uganda team conference.

We were looking forward to seeing friends again, to be sure, and to be honest, starting to look forward to getting home. We checked in, received the usual friendly Ugandan welcome, and were taken to our pleasant room. We found some of the team concluding a meeting in the lounge. We were surprised to find the conference centre has a spacious peaceful park-like setting. It is a haven of calm away from the madness of Entebbe Road. And there are birds singing and little monkeys playing.

On Wednesday afternoon, after team reports in the morning, it was my job to conduct training. Global Care wants to ensure that it gets the results it aims for. So do its supporters. Hence we are working to find better ways of testing and demonstrating our impact. I was gaining a little more confidence in what I was doing, having attended a day’s training at Charities Evaluation Service, and delivered sessions at Global Care HQ, Rukungiri and Soroti. Still it felt rather daunting. There were some blank looks as I started to set the scene. They got even blanker as I introduced the logical framework tool that is generally used for planning and evaluating development programmes. We struggled through the first session, the language gap adding to the difficulty of the unfamiliar concepts and ways of thinking.

For the second session, after tea and snacks, I gave each locality group the task of starting to complete a ‘logframe’ for an aspect of their work. They began with a good will, and soon the shape of the projects was emerging. It was striking to see the energy levels rise as the purpose of the exercise became clearer. It was a big effort for us all to see how the work we do could fit the framework. By the end of the afternoon, most people had a headache, I certainly did. But that was more than compensated for by the sense of achievement. Looking at the forms completed, I repeatedly had to congratulate the teams. Not only had they grasped how to use the structure to describe the impact, aims, results and activities of a project, but the content was impressive. Here were realistic accounts of how they could deliver radical change for vulnerable children in their communities. Their vision and experience were evident in the ambition and design. The added rigour of the logframe process only enhanced the power of their plans. A good result to build on!

The next morning saw the teams wrestling with the challenges of selecting children for sponsorship. They receive so many needy applicants. In their communities, perhaps the majority of families are below the poverty line. Their task is to identify the most vulnerable, the desperately poor. These are folk who have absolutely no resources to meet their basic needs. Mere poverty does not impress them. Children struck by sickness and malnutrition, who are orphans, live in tumbledown hovels AND have guardians who are in some way unable to make a living, these are the ones they look for. They are eager to improve, so they did not flinch from revealing past errors and differences in practice in order to challenge themselves with the hard questions.

Perhaps the essential challenge is to have clear criteria that are followed strictly, except when they are not! Because every child is treated as an individual, and sometimes you have to change things. Sometimes you have to find ways to meet additional needs. This happens especially for children with disabilities, whose care and education can be way more costly than others. We debated about the few whose families prosper after being taken on to the scheme. They can afford to add a little money to the sponsorship to gain access to better schools. Should we continue to support them? And how can we work with guardians who are uneducated and don’t understand the value of schooling, or know how to encourage their child to learn?

I left the conference feeling humbled and seriously impressed with the Global Care Uganda staff. Between them they have many years of experience and many professional qualifications. But beyond this they have a love for needy children, compassion for their families, and a drive for excellence. They show a strong desire to ensure that they direct all their resources to the most desperate cases to bring hope and life. They respect the donors and the organisation that enable them to do this, but for them it is personal and a divine commission. I honour them for it and am proud to call them friends.

To learn more about Global Care and how you can help, click here

Despair and Hope. And a Thing.

In Soroti District Referral Hospital it wasn’t my white skin or my inability to communicate in Ateso that made me feel like an alien accidentally beamed onto a hellish distant planet. I was experiencing a major conflict between being a voyeuristic misery tourist and the urge to flee somewhere safe. Why were we intruding in a place where people were so desperate with sickness and fear and the knowledge that every day, every treatment or procedure was depleting their meagre resources or putting them deeper in debt? Never mind the fact that several people with the most serious, and

malodorous, conditions were not getting any treatment at all or even food, as they were destitute. While I had been wrestling with the challenge of how to eat all the food that people here are giving me, and knew that if I were ill, my travel insurance would whisk me away to a proper hospital. One where people had time for me, all the needed drugs and equipment, and did not need me to pay them extra to do their job.

Nevertheless, under the skin these are people just like you and me, with the same needs and desires, aspirations and fears, loves and loathings. We inhabit the same planet in fact. The glaring and painful differences between us are not accidental, rather they are mainly man made and the result of human decisions and actions, both historical and present-day. Their causes and solutions are in other words political.

Speaking in Nairobi this August, Dr Margaret Chan, Director-General of the World Health Organisation quoted Nobel Laureate Amartya Sen in describing Universal Health Coverage as “an affordable dream”. 100 million families a year are said to be pushed into extreme poverty as a result of unaffordable health expenditure. In 1948, stirred by the impact of war, Britain took the courageous and visionary step of introducing a National Health Service. Its success demonstrates to the world that a reasonable investment of national resources leads to a pooling of risk that is in everyone’s interest. Let us stand together to ensure that it is preserved and that similar systems prevail across the world. Or are we content that the rich get the best treatment, while their neighbours suffer under this intolerable burden?

And then we had the honour to visit the Atiira Disability Support Group, a fine example of people working together to bear burdens in a spirit of brotherhood, transparency, optimism, loyalty and so many other virtues. A completely different set of conflicting emotions for me. This group started in response to my Masters research project on childhood disability in June/July 2012. Back then, when I returned to the shade of the mango tree in Atiira Primary School to feed back my research findings to the people I had been meeting and interviewing, they responded by insisting that I help them to set up a support group on the spot. And they have gone from strength to strength. So now they treat me with great respect and gratitude, though I think they are the heroes of this story and I just had the good fortune to be there at the time they were ready to do this. It is nice to be feted as a celebrity but also uncomfortable, and they always say they will have a drink with us and then prepare a feast with the little resource that they have.

This group has over a hundred members and a committee elected from all the parishes, representing mainly parents of children with disabilities but also disabled adults. They pay a monthly subscription and can then apply for benefits. These can be micro loans, usually for an income generating venture like buying ingredients for foods to sell. Also most families have received a goat. They explained to me that the first kid is repaid to the scheme to give to another family, subsequent ones are kept. They can then be sold to provide for the family’s needs. And the grass and browsing are free, as they live in the country. The group is well led and organised and has recently been registered with the government as a NGO. This enabled them to receive a grant (used for more goats) to add to the regular support they get from Global Care. They seem to give each other a lot of support and encouragement as well, which helps to overcome the stigma and isolation that attaches to disability (and please don’t think that stigma and isolation are only problems in other countries than your own).

So three cheers for Atiira Disability Support Group and Global Care, and none for underfunded or privatised health care disasters. And here's a thing.