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.