A VIP house call

Today I met an important person. I feel it was worth flying thousands of miles, days of car journeys and an anxious, dusty hour on the back of a motorcycle to meet someone so significant. I believe he will have a big influence in my life, now I have had a shower and changed my clothes.

I was led to his home by a special man, a headteacher with a disability who is an example to his community of what a person can achieve. He rode his battered old moped, crutches leaning on the handlebars, down country tracks and footpaths from his school followed by a cloud of fumes and then us on the bike. We were joined at the neighbour’s house by an old-looking lady who jogged home down the track with us. A few weary sheep and goats were tied at the side of the house when we arrived. Our companion turned out to be Agnes*, mother of Charles Edward*, the person we were visiting. Small wooden folding chairs were found for us to sit on in the shade of a tree while our host sat on the ground and we explained the purpose of our visit. Other women and children gathered; Agnes’ daughters-in-law and grandchildren. We are researching the impact of childhood disability in this district and on this occasion visiting a rural community to talk to children in and out of school and their caregivers.

Charles Edward has never attended school and is now twelve years old. We were taken into the home to meet him. It is a single-room oblong hut made of sun-dried mud blocks and a thatched roof. When we entered there was no sign of him, maybe our eyes had still to get used to the darkness inside after the bright sunshine. There was a folded wheelchair next to the bed. Agnes pulled back some hangings and dragged a cloth from the deeper darkness under the bed. Out came a broad smile, followed by the rest of a person. The silent happy smile and eye contact continued throughout our short encounter but Charles cannot move or speak; he only smiles, especially when he sees new people.

We were told that when he was two years old, a house collapsed, burying him. He was pulled out of the rubble and spent four months in hospital but the effect of the treatment was limited. He remains fully dependent, all four limbs paralysed, with no bladder or bowel control and unable to speak. The wheelchair arrived two months ago from the orthopaedic outreach clinic and is used when he needs to be taken somewhere. Before this, his mother carried him. He is quite frequently sick so the most likely destination is the health centre. He has pressure sores from lying on the ground; he does get turned but he has them both sides. Sometimes he is taken to sit outside but he seems to spend a lot of time lying there, under the bed. I could not bring myself to take a photograph.

Little help is available for his mother, though the community is sympathetic. The family is very poor and their additional expenses include clothing, bedding, laundry and medicines. Attending to his needs for care reduces the chance of his mother gaining income and adds to the burden of poverty.

Not many people know about Charles. We have seen several similar cases here in our short time, though his is one of the most severe. Each one is an important person, not just to their family and neighbours, but to us. What kind of a community, what kind of a country, what kind of a world do we all live in? Is it one where each unique person has value, and where everyone can participate as far as she or he is able? Do people receive support from one another to fulfil their potential, or are those who are not easily included just abandoned along with their carers? If we judge a society by how it treats its weakest members, what does this experience tell us? There are no easy answers, but there must be answers.

Giving some money to help this family would be a good thing to do but so much more needs to change. This country is actually quite progressive in taking affirmative action for people with disability in its political structures, and the disability rights movement is gaining strength. I was told with pride how President Museveni came to visit a bee-keeping project run by another teacher in this school who also has a disability. Nevertheless there are still too many people in Charles’ position and too little resource allocated to giving them an equal chance.

So that is why I know I met a very important person today. It may take me a long time to discover what it means in my life but I cannot continue to ignore the rights of people with disability.

*names have been changed