Friday 22 November 2019

Boda Boys save the day

We’ve just completed our final day of work… and can happily report that we’ve achieved everything we set out to do here in Rukungiri (and a bit extra!). Moses and Penlope are still waiting for school reports but apart from that we’ve completed a termly report for each child in the disability project. We’ve updated their care plans and budgets for 2020 as far as possible. There are a few outstanding actions that need to be completed – a child needs to go for rehabilitation and treatment of an ulcer at hospital, but the parents can’t spare the time until the harvest is complete. They’ve agreed that her mother will take her in December. She needs to stay at the hospital for up to a month, but not only are the family subsistence farmers, they also have 5 other children. It’s not easy for an adult in this family to be away from home for 4 weeks.

I haven’t really talked about the school latrines Global Care funded. It hasn’t been a straightforward project! Constructors didn’t understand the specification for accessible latrines, and the first latrine wasn’t really what was expected. However, with practice they got better at understanding and following instructions and the third accessible latrine is pretty good… apart from the back-to-front handrails. Moses has some latrine modifications to sort out, but moving and installing handrails shouldn’t be too difficult or too expensive (see how confident we’re being…). Building latrines at schools has had unexpected positive consequences. One disabled girl no longer pays fees ‘as she is responsible for the new school toilets.’  At another school, nursery children used to share the church latrine – a very old, basic structure. Now the nursery has their own toilet block with one stall with handrails, and the church is allowed to use one latrine on Sundays – they’re very happy.

Latrines and latrine modifications enabled disabled children to access school, or use school latrines independently, but we are stunned by the results of much cheaper interventions. Through this project, 13 children attend school regularly and punctually. All these children have improved mobility – children who hardly walked in March now play football or join in PE and run and play happily with their classmates. All the children have settled well at school and have friends and join in activities. Only one child received discrimination – from a teacher.  Moses, Penlope and the school worked together to resolve the matter. The child is now loved and respected. It’s been fantastic to have the opportunity to meet all the children and we’re humbled and excited by everything the team have achieved. For some children, simply providing a boda taxi to school has brought about all these positive outcomes.

I’m not sure how to sum up this week. I’ve seen fabulous improvements in children that rendered me speechless or an emotional wreck – the Boy Who Went Out* and the boy who ran to hug me, children who wouldn’t look at me in March now greeting me like a friend. I’ve heard some incredibly sad stories – the child who has no food, the boy whose mother drinks and doesn’t care for her children or their home, children who may be able to walk to and from school in a year or so but whose parents can’t afford fees or uniforms. So… although we’re thrilled with this project and amazed at what Moses and Penlope have achieved with relatively small funding in a short time, there are still challenges to consider.  

Both this project and the Disability Support Groups in Soroti are changing disabled children’s lives for the better – in very different ways. We need solutions for supporting disabled children that are appropriate for a specific locality and culture. The geography of this area is a huge factor for any project. Sparsely populated areas separated by miles of hills and rough tracks aren’t conducive to a support group.  Today we met a Disabled People’s representative on the local district council. He asked why we hadn’t built a dormitory for disabled children at a school, and we explained that Global Care decided it was much better to keep families together and not take the disabled children away or risk institutionalising them. He was very happy with the decision and with the results of the project. I’m very glad not to be someone who takes responsibility for these kinds of decisions!

Ultimately, these projects need to become sustainable – not to rely on continued donor support. That’s the biggest challenge. Apparently in Rukungiri, pigs are the animal of choice for income generating, in Soroti it’s goats.  Even the questions of sustainability must be locally appropriate. We must do something for these children, it would break your heart to hear the stories and visit the homes of disabled children who don’t benefit from this kind of project. I hope the blog has stimulated you to think about disability and about disabled children in countries without free health and social care, real inclusive education and special needs teachers, properly accessible buildings and schools, and where poverty and disability together drastically reduce your chances of reaching adulthood. Its tough but true that life here for many is a struggle, and particularly for disabled children. So, thanks for joining me and spare a thought and a prayer for all the children you’ve met in my blog in the last 2 weeks, and for the teams in Soroti and Rukungiri and their incredible work to improve the lives of disabled children. Thank you Global Care, for caring about these children, and giving them hope for the future.


Wednesday 20 November 2019

All God's Children Got Shoes...?

We’re a bit weary this evening.  In 6½ hours we travelled about 100 miles, met 6 disabled children in the project, visited 5 schools (one of which was closed!), had no toilet breaks (although 2 men managed to sneak off at one point), no snacks, got stuck in mud once, moved fallen debris off the muddy path once, got soaked once, dropped 1 bag on a path that had turned into a river, got mobbed 3 times (‘Muzungu, Muzungu, how are you?’), gave 2 boys a lift so they could guide us to a house (child in project, parents failed to tell Moses they’d moved), didn’t get lost.  We drove through a dense forest, up and down steep slippery rutted tracks, and over beautiful rolling hills on relatively OK roads.  When we arrived back in town, 2 of us rushed for the loo then the 4 of us had a huge local buffet for a total price of approx. £10. Phew.

We passed huge rice fields and were perplexed by bright blue structures dotted around the valley. Moses informed us they were shelters for bird scarers. We looked more closely and all over the fields spotted raised mud platforms with rudimentary shelters made from sticks and grass – and occasionally extra protection from a blue plastic sheet. Children and young people perched on the platforms ‘chasing away the birds.’ Moses said, ‘These children have no school, no life.’ It was lashing down with rain. When the sun’s out its blisteringly hot.

It’s been that kind of day.  For our first school visit, we drove down, then walked up, a muddy footpath to the entrance, a gap in a barbed wire fence. Children were clearing grass and weeds and generally tidying the school compound with machetes and hoes.  They were preparing the school for a fundraising day in December – we were invited to attend!  Moses told us the disabled child at the school comes from a family who is ‘not very poor’, so Global Care only pays for transport. He used to be late for school and didn’t come every day but coming to school on a boda (motorbike taxi) means he arrives on time every day. He walks home and is walking much better with the exercise. Apparently ‘not very poor’ doesn’t mean you have shoes, but unlike many of the other children, he was wearing school uniform.

On our second visit we met a subdued little boy. Francis* comes from a very poor family. He lives with his father who Moses described as, ‘A drunkard.’ There’s a huge problem with alcohol abuse in this area, which let’s face it is associated with poverty. There are 100 children in Francis’s class, but the school employed a second teacher and split the class – which of course means the fees will go up. Moses paid Francis’s fees and we talked to his class teacher. He has a club foot which was operated on when he was younger, and he walks with a pronounced limp. The teacher told us he plays and interacts with other children, but, ‘He has a problem...’ She said, ‘He doesn’t have food.’ Francis told us there’s is often no food at home. The children bring packed lunches to school. Francis brings lunch 3 days out of 5. He has no shoes and no uniform.

We were thoughtful in the car but cheered up at our next 2 visits, catching up with children we met in February. Abby was given a standing frame through the project. Her balance has improved since the last time we saw her. George has Cerebral Palsy and can’t walk far, but he’s only 4 so a bit young for school. The project gave him a walker and helped with some costs for George and his father to spend 2 weeks at a rehabilitation hospital. Although his mobility is steadily improving, we think he’ll need a wheelchair for school, so we visited the local school. We were delighted at the positive attitude of the staff to inclusive education. They’ll work with Moses to develop paths and clear ground and there’s a plan for a GCare funded block of latrines including a wheelchair accessible stall. We had similar discussions at the last school.

Today got me thinking about poverty. In Uganda we’re used to seeing children in filthy ragged clothes, shoeless and often not at school. We’re used to children doing heavy chores, fetching water and firewood, looking after younger siblings, helping in the garden.  We’ve become complacent. We visited Simon today. He and his sisters were sheltering from the rain in a tiny smoky hut preparing vegetables to cook on the fire, while their mother worked in the garden some distance away.  Simon greeted us then rushed off to put on a shirt, change into less dirty shorts and wash his face (partially successful). Simon treated us with respect and honour – he deserves the same.  The project provides fees, uniform and scholastic materials, the family lives in obvious poverty.  Its distressing when you hear a child has no food or see children working as human scarecrows.

Poverty here doesn’t fit our Western poverty concept – its extreme. We can’t leave these children isolated and uneducated as well as poor. Disabled children are often last to eat, last to go to school, last to get medical attention. I love this project – we’ve seen 17 of the 19 children receiving help, and all those we met before have a better life. Global Care’s motto is, ‘You can’t do everything, can’t do nothing, must do something.’ And that’s what the disability project is doing – something to change 19 lives.

Tomorrow and Friday we pull all the data and information together, review the children’s care plans and plan and budget for next year. Its going to be hard work but I can’t wait to get started.

If you want to help this project, go to Rukungiri Disability Project on the Global Care website.

*children’s names are made up to protect identity.

Tuesday 19 November 2019

The Girl With One Shoe

We spent today ‘in the field’ again. Oh my gosh – we had some brilliant surprises. I’ve decided you can have another day of mostly positive stories, but we might start looking at challenges too!

In February we visited John* and his family. John is an orphan, has Cerebral Palsy, and lives with his elderly grandparents.  He’d just started school, walking with a walking frame and accompanied by other children. When we visited the school, he was sitting at the back of the class on a mat, his workbook on the floor. He couldn’t manage to walk to the latrine, or use it himself, and Moses had to negotiate a small ‘motivation’ for the teacher so she would accompany him to the toilet. The nursery children were using a tumbledown latrine that belonged to a neighbouring church. Then the Global Care project stepped in.

Today, as we approach John’s classroom, his teacher comes out to greet us. I step into the room, and watch John undo the table on his new chair. I’m stunned as he stands up, then he’s running towards me and flings his arms round my waist. I’m hugging him and laughing (and trying not to cry), and all I can think is, ‘this is what it’s all about.’ John now walks to school without the walker, helped by his siblings and friends. He laughs and smiles with us (although no-one’s smile is as big as mine – I can’t stretch my mouth wide enough for the joy and love spilling out for this child). He’s made friends – the other children sing a song to encourage him to walk! His academic work is steadily improving. And… Global Care built a block of latrines, one has handrails. John takes himself to the toilet. This little boy wasn’t expected to walk independently, wasn’t expected to be able to stay at school, look at him now! I think I’ll remember that hug for a very long time.

We meet another boy at the same school who also has Cerebral Palsy. He looks healthy and happy – different from the shy withdrawn little boy we met in February. He talks to us, plays happily with his classmates – he likes to play football and is walking better. GCare only provides transport to school, he walks home for the exercise. The system seems to be working.

We’re thrilled as we climb back into the car and set off further West. We pass tall eucalyptus trees, banana and coffee plantations, and small trading centres by the roadside which serve the villages situated further into the hills. We meet Glory. A little girl with severe kyphoscoliosis. Before the project she was isolated at home, had no social interaction and was somewhat neglected. She’s still shy with us, but we all agree she looks more healthy – Global Care pays for her to have lunch. GCare built latrines at this school too.  The school is so delighted that they allow Glory to attend school for free. They recognise that it is because of her that they have a proper concrete toilet block, latrines are no longer housed in ramshackle huts. Although Glory’s life has radically changed for the better, she needs more surgical assessment – and money is short for medical treatment. This visit highlights two challenges, getting builders to construct latrines to standard specifications, and the high number of disabled children who require costly surgical or medical interventions to correct deformities and/or prolong life.

Our next visit is more difficult. Charles parks the car and we step up a high ledge then climb a narrow steep uneven path through gardens to reach a modest house. A small boy who is clearly disabled is sitting alone outside. I said this would be mostly positive, but this is a tough visit. Martin’s father comes home to meet us, and we discuss how we might be able to help Martin. We think there are ways his life could be improved but there is much to sort out before we can think of school. We'll spend time developing a plan when we’re in the office at the end of the week.

We visit two children at different schools, Mark and Mary, both with congenital lower limb reductions – one leg which didn’t develop properly. We discuss their walking aids. I say ‘discuss’… Ugandan discussions are protracted and heated. We can’t seem to get anyone to translate for us so at both schools I wander off and distract the other children by taking photos and showing them the results to great hilarity.

When we’re ready to leave the last school, we give Mary a lift home. She’s a bit tense as its her first ride in a car. Worryingly, the children at the school follow us. We’re their first white people and the car a huge novelty. Charles gets out and chases them away. They follow at a distance. When the car stops, Moses lifts Mary out and she races off down a hill hopping on her crutches carefully negotiating rocks and plants. We follow her and greet her Grandmother, Mary’s carer since she was a baby. Tom and Moses go to inspect the small basic latrine GCare built at the home. Mary’s Grandmother thanks us for all Global Care has done for the family. They appreciate GCare so much, they never expected to have their own latrine or for Mary to go to school. Tom brings our finger puppets Bob the Mouse and Molly the Sheep to play with Mary. Her face lights up and we decide its time for Molly to move on. She can stay and be a friend for Mary. Mary tells us that she will love Molly and care for her…

As we walk back to the car the whole village comes to wave goodbye. What a day! We’ve seen incredible transformations in the lives of disabled children and their families, and whole communities who’ve benefited from the latrines. None of this would be possible without Global Care, without Moses and Penelop, or without the people who supported fundraising appeals and became project partners. Our last visit of the day is to a disabled councillor at a trading centre to discuss mobility and toilet aids. As we leave, he thanks the 4 of us for caring about the people he represents, for loving disabled people. This project is about equality and justice, ‘no-one left behind’.

I’m going to put a photo of John up in my office, that hug is a testimony to the power of the love and care Global Care has for disabled children. A hug that makes working for Global Care a joyful privilege.

*All the names are made up to protect identity

Monday 18 November 2019

The Boy Who Went Out

I wasn't sure if I'd manage a blog...there is yet another storm, and power may go off. There is a generator, but it isn’t always used. The hotel promised Moses (Global Care’s Rukungiri Manager) WiFi. There’s no WiFi. The hotel manager told us his boss is coming from Kampala to sort it out. We know what that means… It ain’t likely to happen! Tom's Uganda sim is providing a mobile hotspot which seems to be solving the problem for now.  We have a lovely big room, and hot water when the power is on, so there are plus points. There’s no laundry but one of the waitresses offered to do my washing. We didn’t get supper last night despite ordering food, so this morning we ordered our meal for tonight and we’ll see if that works.  Moses decided we should try this new hotel and he told me, ‘It’s a bit cheap.’ It’s £15 a night. This morning he asked, ‘How is the hotel?’ I said, ‘It’s a bit OK!’

Welcome to Rukungiri – a town in South West Uganda. Rukungiri is a mountainous region, it rains a lot and is often cold.  After our trip in March we were so cold that this time we brought Down jackets and fleece jumpers. We’d worn them within a few hours of our arrival. Today we started in 4 layers but by the end of the day were down to 1. Rukungiri is stunningly beautiful. It’s a shock after the flat plains and swamps of Soroti, the hills are high and steep and most of the time you can see huge mountain ranges in the distance. The crops are different here too – lots of matooke (plantain) and sweet potato.  The trees are tall.  The main road is good but all the roads out of town are local marram and rocks which turns into thick red slimy mud in the rain. Once we’re off the wider roads, the paths become narrow footpaths. Somehow Charles negotiates the Super Custom most of the way.

We arrived in the office this morning at 9am and after a quick catch up set off ‘into the field’.  The Global Care project we’ve come to visit is focussed on supporting children with mobility difficulties to go to school. In March we visited children at home and worked on individual care plans for each child. Accessing school poses many problems but the key things we considered were mobility aids, transport, school fees, welfare support such as a mattress for home or extra feeding, medical help, and accessible school latrines. We met children who had started school but who arrived late because they had to crawl or were in pain, couldn’t make the journey every day, stopped because of discrimination, parents couldn’t pay fees or who couldn’t use the latrines. Other children had never gone to school for all the same reasons, or because the family prioritised able-bodied children. Some children were isolated and neglected.  Over the last 8 months we’ve read reports and seen photos as the children have started attending school regularly and on time. This week we’re visiting children and schools that Moses and his colleague Penelop want to discuss with us – and we’re helping them conduct an annual review and start planning for next year.

Today we were out from 9.30am till 5pm with a one hour stop for lunch and to give Charles a break. Slight digression… when we’re here we eat local food at lunchtime. Today I had chicken stew and mini egg-plant stew with rice, matoke, sweet potatoes and pumpkin. Don’t judge, remember I missed tea yesterday and trust me, I ate half the quantity of the others. Anyway, in the 6½ hours of work, we visited 3 schools and 4 children – that’s how far apart the children live. Up and down muddy hillsides occasionally sliding into hedges and then stomping over muddy and waterlogged school compounds. Great fun!

The highlights were visiting our old friend William* who isn’t well enough to attend school, but who received a wheelchair which has totally transformed his life and the life of his family. When his family used to go out to work or shop, they locked him in the house, unable to move himself. Now they take him to a neighbour who looks after him for the day. His friends take him out in his ‘Muzungu Car’, they took him to a friend’s house last week so he could join in their end of school -leaving exams celebrations. In March he was shy and quiet, today he was laughing and smiling. His brother and sister take him with them when they go to look after the goats. He has a life! His family are no longer worried about him and exhausted from lifting and carrying him. Brilliant.

We visited Mary and Grace at school. Both girls are happy to be able to learn, to be with friends, to play with other children. We saw a change in them too – smiling and laughing and singing to us with their classmates.  Mary has cerebral palsy and we saw a definite improvement in her walking. Grace has a wheelchair and has learnt to get in and out of it herself and her friends push her round school. It’s such a privilege to come here and see the changes in the children and their families. To see laughter where there was no interaction, hope where there was no hope, playing with others where there was isolation.

Today I’m telling you positives, parts that gladdened our hearts and excited us. But behind these beautiful mountains and glorious views children and families are struggling with total poverty. Disabled children live with community discrimination and family rejection. Some schools take a long time to accept disabled children and some teachers are unkind and disrespectful to children with disability.

So don’t get complacent – I’ll tell you the hard stuff another day…

PS - Timmy update, he and his mother are travelling to Entebbe and CORSU hospital tomorrow.

*these are not the children's real names

Friday 15 November 2019

Uncle Mike and the Play Chain

This morning we visited ‘Timmy’ in hospital, he’s very sick. It is a desperate situation. We heard back from the hospital in Entebbe where we sent the photographs, and they’re willing to assess him for free and provide free accommodation to him and his mother. We’re hoping this will be possible, we trust and respect them having met them in March. They’re NGO funded but have a desire to help the most vulnerable and keep costs low where possible. We were despondent as we left the hospital and talked about options for counselling for Timmy and his mother – and the Global Care staff who know him.  There is nothing here in the way of end-of-life care. The church clinic looking after Timmy will treat any infections – but every night in hospital, every drug, every test, costs money. Its impossible to budget for medical care when you have a very sick child with complex disabilities under your care… and 100s of other children with minor illnesses as well as malaria and typhoid. We've just got the green light for Timmy to travel to Entebbe. If you pray, please pray for Timmy and his Mum, and for Global Care, as they work together to help Timmy.

We drove away from the hospital with heavy hearts and once again travelled the long journey to Abeko to visit the Playscheme (which meets in a school classroom). The minute we arrived our day changed.  The Playworkers at the Playscheme were leading parachute games – and disabled children from the Playscheme were playing alongside children at the school. For so long the disabled children were bullied and ostracised, now they were playing together. I realised they were using a parachute I sent out in March (another Wightman Parachute for those who understand). You’re standing in a field in the middle of nowhere (literally) and there are children shouting, laughing and singing, playing games with a huge piece of coloured material and some plastic balls – and it is joyous. 8 months ago, the disabled children were shy, introverted and didn’t move much. Today they were interacting with other children and there was so much fun about the activity. Pure unadulterated fun!

I realised something else. 11 years ago, I came to Soroti with a parachute and taught ‘Uncle Mike’ how to use it. Over the years he’s developed a brilliant kids club with 100s of children who come to his house to play with him – and the parachute. Uncle Mike visited the Playscheme and taught David, a Playworker, how to use the parachute. It’s a brilliant example of how a charity should work. If we have skills and knowledge that we can share, we pass it on, and then we leave people to work their new skills into their own environment and culture. We don’t tell them how to do it, and we don’t do it for them – they don’t need me to play parachute games, they’ve made up their own Ugandan games. Tom & I might have had a sneaky play ourselves – but Playworker David was in charge.

We spent the day gathering stories and listening to people tell us how the Playscheme has impacted their lives. I was speechless by the end!

We heard about John, whose severe burns left him disfigured and with contractures of his arm. He became withdrawn and uncommunicative. When we first met him, he was leaning against a wall and wouldn’t look at us. Today he was in the thick of the parachute games. He used to be laughed at by school mates, and left school. Now he talks. The other children see him eating eggs and porridge at the Playscheme and they think he is someone important! The school is going to sponsor him so he can attend again. Wow!

When William came to the Playscheme he couldn’t walk – he had polio when he was 18 months old and could only sit and crawl. Since he’s been at the Playscheme he’s learnt to walk. At home he can now take a small jerrycan to the borehole, pump water and bring it back and pour it into a bowl. He loves helping his mother – and she is thrilled that he’s no longer just sitting at home isolated.

Mary has learnt to move herself on her bottom. She used to sit still – now she can move around the compound and takes herself into the shade if she’s in the sun or into the house if it rains. Before, she didn’t interact with anyone and wouldn’t take food at the Playscheme. Now she wants food and if her mother goes shopping, she shuffles over to her, hoping for bread.

This group is inspiring and quite thrilling. Four playworkers and a room, some basic food, a few toys – and they’ve worked miracles. They had some training from the UK Special Needs Teachers in the summer and now the room is bright and cheerful. They received sensory toys and learnt games and parachute play for disabled children.  The parents didn’t understand the potential of the children – they’d given up. Many are loving and kind, but they had no hope for their isolated discriminated disabled children.

Now the parents and the children have hope. The DSG committee met us today and I found their positive attitude to the children challenging – they’re so positive and determined to help these children, sacrificing what little they have to find ways to create sustainability for the group and the Playscheme.  As I write this, I wonder how easily I’ll return to my life of swimming and preparing for Christmas. I’d like to think it will be flipping difficult to forget about this group and slip back into my easy, comfortable life.

Wednesday 13 November 2019

I'm sorry, the Mango Tree is booked

Sorry about rubbish photo - camera developed filter fault.. grrr
I'm sitting under yet another mango tree on yet another plastic chair. It's very hot today so I'm glad of the pleasant breeze keeping us cool. My mind wanders as we wait for our meeting to start. Everything happens so slowly here... I'm watching the women. They sit on the hard ground on blankets and cloths they tie round their waists for just this situation. The men are on chairs, as am I, (visitor), and a female member of the executive committee. The women sit quietly, mostly not speaking, just waiting and watching. Some arrived before us and we've been here for 2 hours.

We're in Atiira, another rural village but much nearer town than Abeko. We drove here on reasonably wide bumpy marram roads. The area is flat, miles of scrubland and swamp stretch out to the horizon or the next village. We're visiting another Disability Support Group. When we arrive, we visit a new learning centre for children in the group, it started last month. 14 children and 2 informal teachers cram onto the veranda of a schoolteacher’s house (we’re at a school compound). They don't have a building and the mango tree is booked for our meeting, so the veranda is their only option. Two members of the DSG attended the special needs training at Global Care’s Soroti centre in the summer and it inspired them to start a children’s group. Their only equipment is some learning aids from the training. The children have no paper, no pens, no pencils or crayons. There is no money for the classes. Parents provide ingredients for porridge so the children can eat before they go home. The young assistant teacher is given, ‘something for soap.’ The children have a range of disabilities, but they seem to be having fun as they learn numbers and words.

 Some of their mothers are in the group waiting for the meeting. When we return to the tree, they tell us they love the classes because their children are no longer isolated at home. Here they have a family of friends who love to play together. Elsewhere they're bullied, discriminated against and told, 'Go away,' by their peers.

Now we’re waiting for the meeting... Tom strolls over to chat to a mum and her disabled child. David and Fred are on their phones!  Flies buzz everywhere, we idly flap them (we’re covered in bites – a result of the wet weather).  Children appear outside the semi-circle of chairs to stare at us. Chickens wander into the circle, strut about a bit and leave.  A herd of cows appears in the next field. Girls giggle behind me.  Just as I’m debating whether to join Tom, the meeting starts.

We start with welcomes and introductions. Tom was involved at the start of the group 6 years ago - the Chairman says Tom is a father returned to his family.  The meeting will be like the family telling him what happened while he was away from home.  I am referred to as 'The Wife'.

They are an astounding and inspiring group. As we discuss a report evaluating the impact of the group over the last 6 years, I am once again awed by the group’s achievements. Using tiny monthly members’ contributions (about 40p), a quarterly contribution from Global Care and some government support, they have created a loans scheme and given families livestock.  Families’ lives have been changed and people with no hope can see a future where disabled people have economic stability, work, livestock, and even get married - impossible dreams before. It’s time for Global Care to take the lessons from this project and move to other areas. This group will continue to grow without us, but there are thousands of families living with disability who have no hope.  It's my turn to speak, and as I start, to my horror I'm so emotional my voice shakes and my eyes well up. I am humbled by these people. They have so little and yet together they are changing the lives of disabled children and adults. They are a huge testimony to the power of community groups and cooperative working.

As we go for lunch, we are greeted by an older lady, Agnes.  She reminds Tom that she is the mother of Charles, a boy he met when he was carrying out research in 2012. Everyone was so moved by her child’s appalling situation that the group, with the help of Global Care, built her a house. It’s wonderful to see her today. Tom turns to me and says, ‘Look at her now, helping and supporting a younger woman with her own disabled child.’ This kind of solidarity is the strength of the group.

We have a delicious meal. Now it’s time to go. The children wave goodbye. The group say, ‘Come back, please come home again when you are in Soroti.’ As we leave, we talk about the hope we have for other groups like Abeko.

Some days it’s OK to be just The Wife.

Read more about Agnes and Charles in 2012 at  VIP House Call (not their real names)

Tuesday 12 November 2019

Paintings and Patients

I’ve just had my first hot shower at full volume – it was a much needed treat as I’ve spent most of the day in the Ark, Global Care’s Disability Day care Centre. I’m also very appreciative of the contents of my washbag and realise this was probably the item I missed most when my suitcase went AWOL!

The children are fetched from home by the Global Care minibus. Today, as soon as they arrived, they went straight outside to play in the garden. It's often too hot for the outside play area as it has no shade, this morning it was cloudy first thing. The children piled onto the special swing and as Aida began pushing, smiles and giggles broke out.  When breakfast was ready, we moved inside. Most of the children have learnt to feed themselves but it can be a bit messy… Helping your friend to some of your tea by trying to pour it into his mug is tricky when neither of you have full use of your arms! I love mealtimes. I remember when most of the children had to be fed. It was clear several children have really progressed in the last 8 months. However, one girl ate breakfast incredibly fast – we don’t know when she had her last meal…

The Ark was buzzing today as new mobiles rustled and flapped in the wind, bright displays shimmered in the sun and the children and staff laughed, sang and played. I had a break for lunch and to discuss our findings at Abeko then it was back to the Ark to prepare the children’s letters to their sponsors. Daphine the Ark manager decided to make foot and handprints with poster paint. I walked onto the veranda to a scene of hilarious happy chaos – paint everywhere.  Lucy and Aida were supporting children as they dunked hands and feet in a bowl of paint then tried to manipulate contracted and moving feet and hands onto paper. It was brilliant. These children are like children everywhere, they love getting messy and they love painting. At the end we had beautiful prints – I was very impressed at Daphine's system which somehow kept excess paint off the ‘letters’.  The children were bathed and changed ready for home and after a sharp thundery shower we walked through thick mud and puddles to take the children to the waiting minibus. I dressed a child at the Ark after his shower – his grandmother had packed a T-shirt so torn I worried I’d ruin it as I stretched it over his contracted arms. They have no money for clothes and if they did, the disabled child would be last in line… I was starting to think of the struggles for these children – and the day wasn’t over.

Timmy (made up name) went to the Ark and left when he was ready for school. He’s recently been in and out of hospital. He needs radical surgery to correct a spinal deformity which presses on his lungs and causes severe pain. He can’t use his legs.  There is no-one at the local hospital or the nearest orthopaedic hospital skilled enough to operate. His best chance might be a hospital in Entebbe – but we don’t know for sure. David wanted photographs of Timmy’s spine, limbs and medical records to send to the Entebbe team to ask if they can help.  It’s a very long shot – we don’t know if the surgery is possible, we don't know how much it would cost or if funds are available, and we don’t know if Timmy would survive the journey (he’d have to go by bus).  When Timmy is in hospital his mother stays with him – and can’t work. She has no money. David has taken him to hospital on his motorbike several times… his mother can’t carry him and she can’t afford a motorbike taxi. I know Timmy. I’ve played with him, and he’s a very bright and interesting lad.  We talked to Timmy, took photos, prayed with him, and for the first time this trip I felt close to tears. It is so frustrating, and the injustice and suffering makes me angry. In any country Timmy would have a short life expectancy, here he is in pain and discomfort. His mother can’t afford for him to be in hospital again. David was getting him re-admitted – without Global Care there would literally be no hope.

In many ways the Ark children are in fact, not, like our children... No free access to the NHS, social care and a benefits system for parents and caregivers.  Children like Timmy don’t get the medical support they need because its impossibly expensive and inaccessible. Global Care is amazing – these children have hope and have people who play with them and teach them life skills, there’s medical care for sponsored children and a discretionary emergency medical fund.  

Next time you go to the GP think of Timmy, and whether you could support the Global Care emergency medical fund. I don’t often find myself blatantly promoting Global Care but if you’d been in that tiny one-roomed dark house with that teenager the size of an 8-year-old struggling to breathe, I think you’d forgive me.

Through Global Care's Children at Risk programme you can contribute to the Medical Emergency Fund for as little as £3/ month