Don't forget to remember

On Wednesday I had to get up early to drive to the office.  It was dark outside, and cold in the bathroom because the heating hadn’t started.  I switched on the lights downstairs and started to make breakfast, I was still cold. I tried to remember the last morning when it was this dark, quiet and cold.  It came flooding back…  Kisiizi hospital!

I’m feeling cold as bright lights appear through the darkness and the car slowly approaches our hotel

It is cold as we pull up at the side of the road and Arnold struggles to climb into the high car

Hats, scarves and coats have appeared but still we shiver as cold air comes in through the open door.

The car has heating, it doesn’t reach beyond the first row of seats. I don’t have a coat, or a hat.

The road is rough, the car bounces along and veers from side to side dodging potholes and oncoming traffic.

I realise we’re avoiding people and animals and bicycles – out on the road, no lights, no protection

Notice Arnold, pain on his face. Each bump jars his sensitive joints and skin.

Hungry, I remember the chapattis the hotel made last night so I could have breakfast.

Two chapatis, 5 people.  We try to eat slowly to make our allotted portion last.

The hospital appears, people milling round the fence, climbing out of cars, lorries, buses, taxis, motorbikes

We join the ragged group going through the gate and see a queue of people already waiting patiently on benches

In the cold.  At 7am.

I can see my breath in the air.  I flap my arms and stamp my feet. I’m so cold

I look at the weary bunch of people struggling with pain and sickness, and the cold.

Not everyone has a blanket or a coat.

More people arrive, shivering, but not complaining, to sit, waiting patiently.

Can’t move or you’ll lose your place.

At last the sun  began to warm up the air. We’ve only been waiting for 2 hours.

Slowly the queue of people are registered, and moved to another queue

Then assessed, and moved to another queue

Now it’s too hot to stand outside the shade.

Sun, blistering down, burning skin and making the metal poles supporting the roof too hot to touch

Overpowering heat. Makes the ill feel worse.

People carrying their sick family stagger under the weight and heat

Relatives bearing stretchers from one ward to another stumble as rivers of sweat pour down their faces and necks

I walk outside for a break.

Humanity has gathered to profit from sickness and those who have to care for the patients: food and clothes stalls, raw meat hung on a tree

The smells and dirt and flies and heat threaten to over-power me.

I stop.

Come back to my journey to work in my comfy hire car.

Don’t want to remember, don’t want to forget.

Eyes on the road ahead, car heater on, lunch in a plastic box alongside the thick coat in the boot

Pass an accident, ambulances, paramedics, fire-engine, police cars, tow truck

Don’t want to remember, don’t want to forget

Two cheers for taxes

We are at the airport and we’ve both hit the point where we can’t think straight or make decisions.  I’m looking forward to my bed, food variety (I’m unbelievably full of starch), a tap that produces drinking water, hot showers and wearing jeans.  I was dreading the journey this morning – the road is so bad that sometimes the only way to drive is on the wrong side of the road in the ditch, but then of course the cars/buses/bikes coming in the opposite direction are heading straight for you.  In the event I slept for most of the way this morning, only waking when Charles swerved violently, we went over a bump at speed, or he slammed on the brakes. Then I thought about Tom in Soroti who gets up 4 days a week to start collecting the children to bring to the centre, and 11 hours later will drop the last one off.

I’ve been musing in the last couple of days at how incomparably different my life is at home.  I love Uganda and I love my friends here, and I’m sad to be going as I don’t know if and when I’ll be back.  So – I hereby give anyone reading this blog permission to tell me off if I complain about any of the following things.

1.      The M1 queue in the mornings and the length of time it takes to get to work.

Remind me of those children in Rukungiri who had a 2 day trip to hospital for surgery, then a 2 day trip back to the rehab centre.   Get me to imagine how much pain they feel as the transport bumps and rattles along the unmade roads or slides in the mud.   Remind me that here many people walk to work or school which can be several kilometres away.  They have to walk in tremendous heat and pouring rain. They walk along the side of treacherous roads. Many can’t even afford bicycles.  Allen said the furthest she’d travelled was to Kampala for a Global Care conference.

2.      Anything to do with food!

Remind me that many people here have only what they can grow on whatever piece of land they have.  Remind me about Arnold and his family who were having a meal of cassava – their only meal that day.  And don’t let me forget how much starchy food I was given as that’s what fills people up.  Remind me about banana wilt, floods and droughts and the people so ill and frail they had nothing to eat or sell and couldn’t afford to get to the hospital.  Show me my pictures of the children in the hospital with malnutrition.

3.      My job

Remind me of the parents of a disabled girl who had to go out every day to look for work digging a neighbour’s land.  As that was their only source of income they left the child locked in a shed each morning.

4.      Paying taxes

Remind me that we have free healthcare, at the risk of contradiction I’ll add good roads, free education, a police force and law enforcement agencies and prisons where justice and punishment are not directly related to how much you have for a bribe. We have foster carers, social services and social security.  Our children with disabilities (CWD) have free medical care, surgery, physiotherapy, speech and language therapy, day care, schools, hospices, respite care, mobility allowance and that’s not all.  Here the CWD are amongst the most rejected and despised in the country.  These vulnerable children often live in extreme poverty and few have adequate access to such services.

I could go on! Money, pensions, housing, electricity, clean water, running water, ‘dustbin men’, re-cycling, washing machines, proper beds….

We have been encouraged by so much on this trip – particularly the passion and care shown by the Global Care staff, the work that’s being done with the CWD and the dedication of the staff at Rukungiri, Kampala and Soroti.  We were delighted to see children who had put on weight from the last time we saw them and who appeared healthy and well. It’s been brilliant to see the things we’ve sent out or raised money for being put to good use in the skills centre at Soroti.

We’ve come back with a huge shopping list that we need to discuss with the Global Care UK staff – but we have been challenged to step up our attempts to fund-raise and recruit sponsors.

As I wait to board the plane, I know that my heart will always have a place here and I hope I’ll hold onto the value of making a child smile.  This trip we learnt that our sponsored girl at Atiira was abandoned by her mother and left on her neighbour’s veranda when she was 3 months old.  She’s a shy, introverted little thing.  But on this visit we made her smile with finger puppets.  It doesn’t take much.  That little girl has an education, a meal at school each day, support for healthcare, and a lovely team who look out for her.  How much does it cost us? Each month our sponsorship is not much more than the cost of us going to the pictures and having a bag of popcorn. www.Globalcare.org.uk

We are normal apart from blindness

I arrived at the disability centre this morning just as the children were being carried out of the van after the morning pick-up trip.  I greeted the children and went to play with one of the girls with severe athetoid cerebral palsy.  Her whole body makes continuous involuntary movements and we’ve been trying to teach her to grab and release a variety of toys.   

 It takes a huge amount of effort for her to even get her arms in approximately the right place but we’ve been encouraged that with patience and perseverance she can usually at least hold onto something, even if letting go isn’t always voluntary.  Today she was quite vocal which is unusual but I just chatted away assuming she was talking unintelligible words in Ateso (the local language).  Imagine my total delight when Tom pointed out from the other side of the room that she was saying ‘Barbara’!  I shrieked with excitement.  She has a beautiful smile and was laughing as we realised what she was saying, and tried to get her uncontrollable tongue to behave so she could say it again.   We can’t even remember when she heard my name apart from on the first day.

Today has been one of those days when I remembered some of the things I learnt about disability last year.  I began to recall how much severely disabled children can achieve, and that I am still limited by my own expectations and assumptions about how a particular disability affects each individual child.  My little friend has a condition that makes it impossible for her to manage any basic functions – yet her cognitive functions are pretty intact.  In an environment like this, where there is no specialist community care, and it is difficult for her family and carers to understand or cope with her problems, I fear that her future is bleak.  It is unlikely that she will ever get to school here, and as I write this the tears start, because I want to stay and have at least another week to try and teach the staff some of the things I’ve been doing with her.  But… resources are scarce and she needs regular stimulation, as do the other 9 children at the centre, if they are to make any measurable improvements.

However, for some of the other children, life looks more hopeful.  This morning we visited the school for the blind.  The school is run by an amazing nun, Sister Mary Kevin.  She exudes peace and love and carries such dignity and respect that it is impossible not to be moved by her.   

The school has many challenges.  Tom asked Sr Mary Kevin what were her greatest needs and she started by saying braille tablets and styluses and braille paper, then she added a long list including braille writers, food, soap (the children are all boarders) and braille ‘tubes’ for maths.  A slate costs 50,000UgX (about £12) and a braille writer 2.5mill UgX.  A ream of paper is 150,000UgX.  The fees are 300,000UgX a term, which just about covers the cost of the paper and something for food

The fees are beyond the capabilities of most guardians and the school only has 72 children although it has capacity for 200. 

We went into some of the classrooms and were greeted by happy smiling children who showed us how they read and write in braille or with assistance if they are partially sighted.  Today was the day when I had to leave a room because I found myself crying.  These children have so little and the school is running on a shoe-string yet there is a sense of peace and joy in the classrooms.  Many of the children have been ostracised, beaten and mistreated by their communities and families and don’t want to go home in the holidays because school is the only place they find love, care, compassion and understanding.  The last straw in my ability to gain control of my emotions was seeing Tom with a girl he interviewed last year.  This child suffered unbelievable cruelty and now here she was performing a poem about disability for us.  
 

Two girls taught me to write the braille alphabet, two classes sang to us, and we arranged for the team to take one of the blind girls from the centre for assessment.  As I’m writing, a bundle of emotions are jostling for attention, but while my whole being wants to scream at the injustices suffered by blind children, and the lack of support for specialist equipment for their education, I thank God for people like Sr Mary Kevin who create a loving safe place where they can learn. There are no barriers here for the physically disabled or mentally challenged.  It is cost that limits the potential for education.

We also visited the school for the deaf.  It’s a long drive! I visited the school at Ngora 5 years ago and my experience today was completely different.  Last time it was a bit chaotic, this time there was a sense of calm and joy.  The children greeted us warmly and seemed content.  There was a lot of visible poverty, no shoes, no uniform and torn uniforms and we heard stories similar to those at the school for the blind.  Parents start paying fees but don’t pay the balance. They even leave the children at school over the holidays.  They don’t come to open days.  Children are sent to board without basic necessities.  We all have ‘sign’ names that we’ve been given at the various schools we’ve visited but we realised Charles didn’t have one so we asked the children to give him one.  We even learnt some sign words for animals when Tom produced the finger puppets I’d brought with me.  We handed out school packs.  And…. We arranged for one of the deaf children at the centre to go for assessment to see if she can go to the school.

So it has been a good day, but one that has made us frustrated and sad yet at other times excited and encouraged.  We sat at supper tonight and felt drained and overwhelmed by the enormity of the problems CWD face in this country.  Both here and at Rukungiri we have seen many things that we could support or suggest as projects to Global Care.  There is much that could be improved by relatively small amounts of money.  We’re very glad it’s not us having to make decisions about where the money goes.  But…. we are becoming more and more determined to fight for the rights and dignity of the children with disability in Uganda, and to start being serious about ‘doing something’.

On the lighter side, I had fish and chips for tea yet again.   This is due to a combination of lack of choice on the menu, knowing I can’t eat chips every day at home, and failure to resist the lure of a whole fried tilapia.

Obule-Angoram has received an eclipse

Our day started in a rural village.  Followers of last year’s blog may remember Betty, who was appointed by her community to run a nursery school because it was too far for these little children to walk to the nearest available nursery.  Today we visited the nursery.   

They meet in a church building – a mud and pole structure with a leaking thatched roof.  They have benches to sit on, and proudly produced the 2 books I gave them last year.  That is all they have.  The parents have stopped paying for the children to attend so Betty no longer receives a salary.  She has her own home and family to look after as well.   They have no books, no pencils, no blackboard, no food.  Betty cannot afford the 60,000UgX for training (about £15).  The children were dressed in rags, without shoes and were shy and afraid of us.  They are wary of strangers.  Some had never seen a Mzungu before.

We went with James and Hannah who are working at the Global Care centre in Soroti for 6 months, and David came too.   Before we left the office I rummaged in my remaining bag and asked David if felt pens would be a good thing to take.  Only if you’ve got paper, he said. Fortunately I’d taken some colouring sheets so they went too.  As we sat facing the children we tried to engage with them.  The room was dark and dusty and the main light shone from Betty’s smiling face and her welcoming assistant.  She was excited to see us again and pleased that we could visit. Our minds struggled to deal with the situation.  We sang to them, Tom played his whistle and we tried to get them to dance, they sang to us, we drew with them, we even threw a Frisbee.  But it was a losing battle.  

On this trip, most children shout at us, wave, smile, and want to touch us.  This morning my heart felt that it would break before I could get a flicker of pleasure from the anxious little faces staring up at us suspiciously.   This is their life.  This is the start of their education – how different from the nursery classes our own children attended where they had purpose built rooms and gardens, and too much choice of what to play with.  Where there was no shortage of learning materials as well as play equipment.  And how much would it cost to train Betty and supply the children with basic materials?  A lot less than taking my family out for a meal!

 

In complete contrast, we visited Angoram school next, where we have seen massive changes and improvement over the years thanks to school partnership projects, the generosity of UK donors and hard work and commitment from the local community. This year they have extended the teachers’ accommodation to 6 huts and are eating the cassava they planted in the field I saw last year.  But – they still need another concrete classroom. We were treated to the choir and a drama which basically informed us that to everyone’s amazement, the school had received an eclipse!

Tom will write about the very long meeting (1pm – 4pm) we attended next. See drtomgoesglobal.blogspot.com. We ate a very rushed lunch/tea back at the centre and some of us went to see the parachute in use with the wonderful Odongo Michael in his village. 

Unfortunately the rains came before we could play much, but we had a cup of tea and mandasi (bit like doughnuts) at Michael’s house while the children played outside with a new football (thanks to my friends at work) and skipping ropes we brought out last time.

So it has been a mixed day. On the one hand we are very encouraged to see money we have raised and play equipment we’ve taken out being put to good use.  We love to see happy children in a great educational or social environment, and know that in small ways we and our friends and family have brought even the tiniest spark of improvement in a child’s life.  On the other hand, we are faced by the enormity of the challenge to find the most needy and vulnerable children and for those in positions of authority to make the right decisions about where to spend what little money is given.  How can UK and local budget holders decide who receives help, and who doesn’t? Which child can be sponsored and which can’t? And once again I’m challenged by the comfort of my own lifestyle, and the seemingly impossible levels of poverty at which people here not only manage to survive, but like Betty, give up their own time to improve life for those worse off than themselves.

Home from Home

Isn’t it wonderful how you can visit some places and right from the start they feel like home?  Then each time you return, your new extended family is sitting waiting for you to arrive, watching down the road for the sound of a car.  And it doesn’t matter that there are some things that are unusual and even at times uncomfortable because the more you visit the more its all just part of the experience.

Today has been another exciting day.  We arrived last night and had greeted some of the team but today we met more – both old friends, and new folk who are working at the centre.  It’s been great to catch up with how the skills centre is progressing and see the sewing machines Hope House bought last year all being used by new students.   I was shown the effects of a drill I sent out which is being used to make bead curtains (It was one of the things I bought with the money ‘a Good Yarn’ raised).   They had been going to make seed jewellery with it but there has been a problem with getting the seeds.  I took a crochet basket my friend Ruth made, decorated with the handmade beads the skills centre make.  Immediately they came up with loads of ideas…baskets, table mats, cushion covers. 

I love this team!   They have such passion for the area and for the children and have set up many sustainable projects for both the families of sponsored children and the community in general.

The highlight today though has been spending time with the children at the day care centre.   

They are a fantastic bunch of loveable children who shrieked with delight at the new toys we brought and who as the day wore on became more relaxed and responsive to us.  These children mostly have fairly severe physical disabilities and have problems with uncontrollable movement, paralysis, deformity, loss of sight and learning disabilities.   We met up with one of the boys Tom spent time with last year and didn’t recognise him at first as he has begun to increase in size. We heard tales of mothers who ran away when they knew their child was disabled, a baby abandoned at the hospital, mothers who can now work because they can leave the child safely.  We watched as the lovely Ida cleaned the children up, fed them, bathed them, changed them, cuddled them and played with them, helped by other members of the team throughout the day.  Tom & I had mixed success at feeding the children or giving them chai but the children laughed at us making a mess, and we laughed at them making a mess!

I feel full of love and appreciation for my Tom and Okello Tom and all the work they did last year in support of Global Care’s disability centre project. The research, and their determination to let the guardians of the children say for themselves where they most needed help, has had a real influence on the whole set-up.  To watch the pair of them working with the children, loving and caring for them, playing with them and ultimately interacting with them was truly moving.    

The more we hear about what Global Care has done and is doing, the more we know that this is absolutely the right charity for us to be involved with.  Our trip is making us realise how short they are of support and sponsors, here, in Kampala and in Rukungiri.  There is a seemingly never ending supply of horror stories and absolute poverty and vulnerability of children. Both here and in Rukungiri the waiting list for sponsors is so long they have to turn new people away.  When you’ve seen first-hand the effect that sponsorship has, and realise how little it costs for us who live in such luxury and relative security to sponsor a child or support the projects here, I can only ask myself how to decide when I have given enough.  More importantly, how can I go back to my job, my house, my holidays, my delicious varied diet and my weekly supermarket shop and each year let the enormity of what I’ve seen fade?

One of the great things about today is our current accommodation.  For £18 for both of us we have B&B and have been given the executive room with a coffee table and arm chairs – we haven’t had much in the way of comfy chairs for the last 2 weeks.  When I got back to the guest house tonight, I had the fabulous luxury of a hot shower and soap I brought from home, and I washed off the dirt, spit, food, urine and dust I acquired with the children today.  I only hope it won’t be so easy to wash away the memories in the comfort of my UK home.