Last week I was in Uganda, travelling into some of the poorest communities 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 TB and in many cases HIV. I met families and single parents, widows and widowers to both diseases, and listened to them tell me of the struggles of their lives.
I could write that I have been humbled or inspired by the people I have met, but that would be gauche and inappropriate; these people don’t exist as instruments of my self-realisation.
And anyway, we all know the world is cruel; we all know that most people in it are poor; we all know that children are dying for lack of education, lack of medication, lack of care. I was just put in a position where I couldn’t let it slip from my mind – where instead I was face to face with these truths.
I would accept the kind hospitality of people struggling to survive, and be introduced to their children living with HIV and being treated for TB, behaving as you would expect any children to: with playfulness; cheekiness; shyness; inquisitiveness; sulkiness.
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 and to draw. I would ask 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 the costs of treating it are crippling to these people.
A farmer weakened by TB cannot plough the earth, cannot then pay his rent for the year, the great and unrelenting weight 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 understand better having seen first hand the real lives involved.
At times it hurt to hear the stories of how a child is born with HIV, to a mother that will die soon after because there are not the resources to save her, or how a mother abandoned to become the sole source of support for her family struggles every day to feed her ailing child and herself.
Or to hear how the hope of a bright little boy in a torn school uniform is simply to one day drive a car – and how his face lights up, casting away the shadows of his previous shyness, when he imagines this; I remembered how when I was his age, the same simple dream was so exciting and I understood and 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.
No, 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.