The Cost of Living

While we were in Uganda we heard that my gorgeous sister-in-law had been diagnosed with breast cancer. In Uganda we spent time with friends going through health heartache themselves.  While I don’t want to diminish the enormity of a diagnosis of cancer, my sister-in-law had access to free tests and scans and several consultants, and will have access to a comprehensive treatment programme. Our Ugandan friends were having to fund all their healthcare and for a diagnosis such as cancer, even if services can be found, costs are likely to be prohibitive.

Have you ever looked at health statistics for other countries compared to the UK?  Here’s a few to get you started (from 2013) courtesy of WHO and the World Bank:  

• Life expectancy at birth m/f (years): Uganda  57/61, UK 79/83
•  Probability that a newborn baby will die before reaching age five  (per 1,000 live births): Uganda 66, UK 5
• Probability of dying between 15 and 60 years m/f  (per 1 000 population): Uganda 380/317, UK 88/55

Visit Uganda and you don’t see many older people.  Most families have stories of infant or child death, or death from a preventable/ curable disease.  At camp we had a minute’s silence to remember a sponsored child who had recently died. 

For a rural community the nearest professional health services may be many miles away, people needing to walk or be carried for hours to reach help.  If you’re lucky you can access a bicycle and with money you might afford a motorbike ‘taxi’.  But that’s just the start – you need money to pay for attending a clinic, medication, tests or scans, every night in hospital, surgery, every doctor you see.  If you’re in hospital someone has to look after you – to provide food and do your washing.  Hospitals have areas for relatives to sleep, wash and cook.  And of course your nearest hospital may not provide the specialist care you need – so then there’s more transport and accommodation costs.  

Some healthcare is free…  but the only free clinics we’ve seen weren’t staffed by professional/ trained healthcare workers and medication is scarce. The ‘Global Fund’ provides grants for medication such as antiretroviral therapy (ART) to fight HIV and TB – then you read, ‘Uganda aims to increase coverage of ART to 69 percent of people living with HIV in 2017 from a baseline of 44 percent in 2014’.  Depressing.

We saw a child who lost her feet due to persistent infection and children born with HIV who didn’t have treatment and consequently have on-going health problems. 

We’ve seen children funded by NGOs for a first surgery for congenital problems but then there’s no funding for subsequent surgery – and they have residual deformities and health problems.  When we lost our cases we found all the prescription medications we needed – there was no shortage of drugs, but while the cost was insignificant to us, in some cases one pill can cost half a day’s wages.

And then there’s Global Care.  I was so impressed by local staff.  If children were ill they were taken to clinic. Every day someone took food three times a day to the 6 children admitted to hospital during camp.   Sponsored children have access to medical funds and there is a special fund for major health problems or surgery.  Local staff go out of their way to make sure children are well, and if not, transport them to clinics or hospitals and make sure they have tests, medication or surgery they need. They support families with ill children.

One morning Tom said to me ‘someone wants to see you’.  I turned round and saw a pretty smiling teenager and my heart missed a beat as I recognised *Ekellot. I was telling the team about her on the way up from Kampala as I felt sad thinking about her. I suspected she would have died in the two years since we’d been to Soroti. She had HIV and TB but was seriously depressed and not compliant with her medications.  She was extremely ill, and not improving when we left her even though the local Global Care team were doing all they could to get her medication and watch her taking her pills.  The staff told us that she became too ill to be looked after at the centre and went back to her village. However, the staff had passed her details to TASO (The Aids Support Organisation). TASO provided support and counselling and she became involved in their drama group visiting local schools and youth organisations providing information about HIV/AIDs.  Now she was looking happy and healthy. Yes, I cried! Another girl we know well who has HIV was also looking well and more cheerful than last time we saw her.

Good food, healthcare, transport, love and security, education, working with local communities and support organisations, and overall a commitment to provide for the most vulnerable children, that’s why I support Global Care and why every year we continue with sponsorship.

*name changed and photos not of children written about in this blog! 

Who built the ark?

Since I didn’t get time to write a blog while I was in Uganda, I’ve decided to retrospectively blog about our trip.  Today I‘m going to introduce The Ark.  

According to t’Internet, an ‘ark’ represents something that provides protection and safety.  Think about a group of children needing a safe environment…. and for whom living in Africa makes them particularly vulnerable.  UNICEF say ‘Children with disabilities (CWD) are one of the most marginalized and excluded groups in society’, discriminated against through negative attitudes, inadequate policies and legislation, and often with no rights to healthcare, education and protection.  The World Health Organisation (WHO) claim that ‘Children with disabilities are almost four times more likely to experience violence than non-disabled children’.  In developing countries 90% of CWD do not attend school according to UNESCO.  The UNICEF funded Research study on children with disabilities living in Uganda provide some insight into the situation in Uganda.

Global Care have created a day centre in Soroti, currently caring for 10 CWD.  All The Ark children have physical disabilities, most have mobility issues.  Some have learning disabilities too.  On our visits to Uganda we’ve met many CWD and often been shocked by the way they live.  The children are generally isolated, some locked or hidden away away for hours, or left with relatives and neighbours who don’t care for them properly.  We’ve met guardians who couldn’t work because of looking after a disabled child - further deepening the cycle of poverty and hardship. 

When we arrived at the Soroti Centre this year, having greeted the staff, the next thing I wanted to do was get into The Ark.  We had to finish camp preparations first but then some of us hurried to The Ark. I can’t describe the feeling when I said ‘Hello’ to a child I hadn’t seen for 2 years, and her face was washed with smiles; or when *Simon reached out his arms to be picked up giggling with glee then jumped with excitement as I helped him stand.   *Martha (who is blind) brought tears to my eyes when I stroked her face and she smiled and reached up to touch my hand.   

We all felt emotional as Tom played ‘round and round the garden’ with a blind and deaf child who was previously unresponsive - and she smiled broadly as she was tickled. They are incredibly appealing, responsive, and rewarding children.  I think the whole UK team fell in love with the group and most team members developed a real connection with at least one child.

As the week progressed, we brought the Ark children up to the camp tents where they could listen and watch, or sing and dance.  There was no shortage of volunteers to help carry the children so they could be involved.  We took it in turns to sit with and support these lovable noisy, messy, sometimes difficult to control, children on the mat in the shade.  We managed to help them join in with games and activities. I don’t think any of us will forget the voice singing out ‘Be bold, be strong’ throughout the day or the girl who loved the crafts and wanted her own work folder. My heart skipped when *Acem looked at us and audibly said Hannah’s and my names, mouth and tongue struggling round the words and arms and legs flailing with effort.

These children have such potential – and provide huge reward and joy.  We saw improvements in many of the children from our last visit. I have tremendous awe and respect for the Ugandan team who collect the children each morning and take them home at the end of the day, who feed, change and bathe the children, play with them, talk to them, and teach them songs.

Every time I meet the children in The Ark they challenge me. Challenge my expectations and perceptions, challenge my prejudices and my response to such naked need.  

I know I need to never forget that these 10 are the ‘lucky’ ones, and we need to find ways to fight to improve the situation for many more children with disabilities.  Thank you Global Care for The Ark. Thank you Global Care for a sponsorship scheme that includes children with disabilities. 

*names changed to protect identities

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.