“The worst thing in the world varies from individual to individual. It may be burial alive, or death by fire, or by drowning, or by impalement, or fifty other deaths. There are cases where it is some quite trivial thing, not even fatal.”
— George Orwell, 1984

My eldest daughter keeps a pair of rats and I’m quite happy to let them sit on my shoulder while she cleans them out; snakes have never bothered me and, while I don’t much like spiders, I could hold a tarantula if I had to. For me the worst thing in the world, the one unendurable terror, the thing that I cannot even imagine without an accelerating pulse and a compulsion to stand up and move fast in any direction, is incarceration in a very small space.

This does not explain why the photograph that appeared in The Sunday Times in June 2004 had such a profound effect on me, because at first glance all I saw was the distorted face of a little boy staring through wire mesh. He looked deeply distressed, as though he was screaming. I don’t think that I realised, even subliminally, that he was caged. All I felt was an immediate, instinctive revulsion towards the image, and I had half-turned the page before shame stopped me.

“If you read the piece and it’s as bad as the picture,” I thought, “then you’ve got to do something about it.” And so I turned back, I read Justin Sparks’s article, and it was all my worst things in the world.

The boy in the photograph’s name was Vasek Knotek. He was around five years old (his carers were not sure) and had lived in the Raby “care home” near Prague since he had been a baby. Mentally handicapped, he was let out of the cage once a day so that it could be cleaned, then returned to it. His only human contact was nappy changes and washes.

Vasek lived in the basement of the three-floor institution, and Sparks’s description of it made George Orwell’s Room 101 sound like a soft play centre:

“The basement is somewhere nobody would choose to live. From the ground floor, where residents wander the corridors aimlessly, it is approached by a flight of stairs. Those who descend are confronted first by the stench of excrement and bleach, then by the paralysing sight of a human menagerie.

“There are three children in separate cages in the first room. A tall boy of 15 called Pavel stands up and stretches his hands through the bars in an effort to touch anyone coming towards him. Next to him is another teenage boy, rocking backwards and forwards and occasionally clutching the bars of his cage. Opposite is Martin, a vulnerable-looking boy of about nine, who moves inquisitively to the front of his cage if someone is near. There are few novelties and hardly any visitors for the 19 residents of the basement.

“The older boys make less fuss about the daily 11am lock-up, as if they are conditioned to the routine. It is the younger ones who resist, struggle and protest. Vasek shakes the iron frame with all the force he can muster and tears at the wire mesh that confines him. His screams of anger ring through the building. In an adjacent cage his friend Michal puts his hands over his ears to shut out the noise and bursts into tears.”

I tore out the article, frightened of losing it even though it was the most disturbing thing I had ever read. The following day I photocopied the page 50 times and started writing letters.

Given what I know now, my initial burst of determination to “do something” might have been tempered by a good dose of pessimism. While I have read many briefing papers and reports from advocacy bodies, I have barely penetrated the vast, dark pit of a problem into which Sparks’s article shone a torch.

The number of children living in European institutions like the Raby home is huge. Mentally and physically handicapped children are over-represented, but there are also thousands upon thousands of healthy children growing up without their parents in large institutions and they, too, are vulnerable to neglect and abuse.