Last week I was in Uganda, I travelled to meet some of the poorest communities in and around Kampala, to speak with parents and children who have been affected by Tuberculosis, and often HIV as well.
I met kids as young as two, who are being treated for both diseases.
These were children of families of all sizes, including single parents – widows and widowers to both diseases. I asked about their lives, and they told me. Of their struggles and of their experiences.
I could write that I have been humbled or inspired by the people I met, but that is not quite the case, and these people don’t exist as instruments of my self-realisation.
And anyway, we all know the world is cruel. That most people in it are poor. We all know that children are dying for lack of medication, lack of education, lack of care. I was just put temporarily in a position where I couldn’t let it slip from my mind – where instead I was unremittingly face to face with these truths.
In Kampala, the traffic is thick and constant. Vehicles flow slowly through the city in endless lines of thick fumes and noise. By the side of the road there are makeshift shops constructed, it is common to see ones that sell coffins. Of all sizes. From adult right down to newborn.
In the satellite villages I visited, I accepted the kind hospitality of people struggling to survive, and was introduced to their children who are living with HIV and being treated for TB. I would meet children behaving as you would expect any children in the world to: with playfulness; cheekiness; shyness; inquisitiveness; sulkiness, according to their personalities or the circumstances in which I chanced to meet them.
To put them at ease I might smile or pull a stupid face, or hand them a pencil and a piece of paper so they could write or draw.
I asked them what they have experienced, and what they hope for the future. It was my job to learn about their lives, and those of their families, and how the programmes introduced by the NGO I work for has affected them.
No, they aren’t objects of pity, or symbols of inspiration. They are just people, many of them very friendly and interesting, living trying lives under the yoke of a corrupt, parasitic government that is sucking the life from them and growing ever fat in doing so.
They are people like you and I, but mired in a poverty that oppresses them ever further.
TB is a disease of poverty, it thrives in the poorly ventilated and crowded homes that the poorest people in the world must live in, and, trapped in a cycle of poverty, the costs of treating it are crippling to many of these people.
A farmer weakened by TB cannot plough the earth, cannot then pay his rent for the year, the great and unrelenting weight of their situation crushes them further, even as the disease wastes them and they are made weaker.
I learned about the realities of treating TB, of poverty, which I knew on paper, but perhaps now understand better having seen first hand the real lives involved.
At times it was distressing to witness the reality of life for many of these people; to meet a child – as bonny and hopeful as any – born with HIV to a mother who will die soon after because there are not the resources to save her; to meet a mother abandoned, to become the sole source of support for her family, and to see how she struggles every day to feed her ailing child and herself.
I listened to a bright little boy in a torn school uniform describe his hope for the future – to one day drive a car. His face lit up with the thought, casting away the shadows of his previous shyness.
Sitting there talking to him, I remembered how when I was his age, I shared this same simple dream. We smiled at the thought together.
The father of another child expressed to me only the hope that their children can one day be well, and just like other children.
They aren’t objects of pity, or symbols of inspiration. No more or less than any child. They are just like other children and they should be able to live their lives like any other children, free from treatable diseases like TB.
The DETECT TB programme has saved 1000 children in the two years it has been in place in two districts in Uganda: providing education to communities; training for health workers; testing and screening; and free medication to treat children. It desperately needs funding in order to continue.