TB continued…

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.

Two Ugandan children in Wakiso districtI 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.

A child being treated for TB in the Wakiso district of UgandaOr 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.

You can donate to help the DETECT TB programme save children’s lives

Give sorrow words

A boy cries as he plays violin at the funeral of his mentor, who helped him escape poverty
Diego Frazão Torquato, photo credit Mark Tristan

Okay. Be prepared for this, it may make you cry, I write ‘may’ because there is a chance you are an internet connected washing machine or something.

The other day I chanced upon this image with the caption ‘a 12 year old boy plays violin at the funeral of his mentor, who helped him escape poverty and violence through music’.

Because I am not a washing machine this was enough to move me, the story within that sentence and the photo of the young boy’s tears, brought a lump to my fabric softener drawer. But then I decided to look into the story further.

I found out that his mentor was Evandro Joao da Silva, a man who co-ordinated a hopeful charity group called Afroreggae that encourages young people from all over Brazil to take part in activities such as football, music and capoeira to help avoid their descent into the world of drug-trafficking.

It is heartening to know there are people like this in the world, people struggling to fight the encroaching shadows with whatever light they can generate, whatever love they can muster against the vast indifference of a cruel world.

But this inspiring man, Evandro, was murdered in a robbery in Rio in October 2009.

The details of the robbery, captured in CCTV footage, add insult to injury:

The footage shows two men approaching Evandro and throwing him to the ground before shooting him. They then proceed to remove his jacket and flee the scene.

A military police car then passes the scene, with a full view of Evandro lying on the ground.

The officers do not assist Evandro but chase the thieves. On catching them, they do not arrest them but let them go.

The footage shows one of the thieves walking away just a few minutes later and afterwards, one of the officers putting Evandro’s belongings into the police car.

The police drive off, and Evandro is left to bleed to death.

Source: Rio Times 2009

So there you have it, a tragic and terrible story, a dark stone flecked with golden slivers of  the hope and kindness of people pitted against the grinding and constant gloom of greed and poverty. Upsetting, right?

But it doesn’t end there.

Within a year of playing the violin and weeping at the funeral of his murdered mentor, Diego was diagnosed with Leukemia.

This came shortly after his mother was diagnosed with an inoperable brain tumour.

Diego died aged 12 after slipping into a coma and an unsuccessful operation.

Here, at his funeral, his friends, other children from the Afroreggae program, play a final homage to him – the song Asa Branca.

What is the world, with all its indignity and suffering?

There are not words fit to say.

But there is, at least, music that tenderly, furiously, fills the abject silence.

Epilogue: I was going through a box of personal items the other day when I came upon a ticket  from 2003, when I was working in International Politics and had been sent to Brazil.

I was able to take a few days in Rio as holiday and while there I went to see Public Enemy (and the Streets) play live,  I remember very much enjoying the other Brazillian bands I saw supporting them, one of which was Afro Reggae.

20140218-085022.jpg