Chronicle of a death foretold
Mark Lawson
Monday March 8, 2004
The Guardian
I recently commented on how multi-channel television has led to explicit titles designed to trap channel-flickers. The Boy Whose Skin Fell Off, a Channel 4 documentary to be screened later this month, sounds like an example of this huckstering simplicity but, by the end, you don't grudge it any popularising tactics. Few television programmes in history have managed simultaneously to be so hard to watch and so rewarding.
The child of the title is Jonny Kennedy, a jaunty Geordie who suffers from a rare genetic deformity that causes skin cells constantly to shed. He was born with one leg raw; over 36 years, in which the condition also prevented puberty occurring, his scalp was a thick cap of scabs, his hands and feet were useless stubs of skin and his stunted body was enclosed in a suit of dressings.
In September 2002, the bloody battle for Jonny's epidermis climaxed in terminal cancer and he was given a year to live. The Boy Whose Skin Fell Off is a video diary of his final four months last summer. Though the diaries of the dying have been largely a literary or weblog genre, this is not untested territory for television; John Diamond and Oscar Moore both made TV documentary versions of their terminal journals. Even so, The Boy Whose Skin Fell Off sets new standards of visual frankness and verbal tone. In the opening shot of the documentary, Jonny's dead body lies in his wheelchair in the middle of his living room. His mother and brother speak directly to the camera about their mixture of relief and regret. Now Jonny's voice - in that cheeky, breezy north-eastern style most known on television in The Likely Lads and Auf Weidersehen, Pet - begins a posthumous commentary: "I'll tell you the story of my life and death."
Jonny's pre-recorded pieces are combined with a second voiceover from the actor Kevin Whately, delivered at a chipper lick, drawing out all the sing-song upbeats of Geordie. For a moment, this sounds monstrously wrong, a dereliction of directing and acting, but it soon becomes clear that this would have been the tone Jonny wanted. Similarly, the title The Boy Whose Skin Fell Off isn't an executive's lunge for viewer numbers: it is an expression of the subject's dislike of sentimentality.
Starting as he means to go out, Jonny visits an undertaker to select his coffin. He cheerfully tests the wood against his feet and tells the funeral director to stencil the label of a can of Heinz baked beans on the outside of the pine. "It doesn't mean anything, but it will get them talking."
At this stage, we may take his approach as theatrical bravado. But the rest of the film shows that the impossibly thin skin on Jonny Kennedy's body was compensated for by an improbably thick psychological one. Lunching with his oldest school friend, he begins to improvise a fantasy about the television crew, having done their four months' filming, becoming impatient for him to die. He even imagines the cameraman leaning over him and creepily asking: "Are you feeling sleepy, son?" Asked in an interview about his illness, he explains: "The skin's like Velcro but the hinges are missing. So any knocks or severe friction - like constant wanking - doesn't go well with the condition." When Nell McAndrew bursts into tears after meeting him at a charity event, her own perfect skin making the encounter seem even more distressing, Jonny and his schoolmate reflect on how "the old sob-story works every time".
The risk of these scenes is that they make death seem easy and suggest that Jonny conquered suffering through comedy. The John Diamond documentaries were probably a little too reassuring about the reality of dying young. So producer-director Patrick Collinson is justified in including gruesome scenes of the dressings being changed and Jonny near the end, helpless and exhausted after insisting on flying to London to meet Cherie Blair at an event for a charity that seeks to find the gene that denied him a normal existence.
The programme also shows that some of Jonny's coping strategies are not as tough and rational as his blunt talk might have suggested. A member of the local Spiritualist church, he believed that he would come back as a ghost. At the Sunday morning seance, the moderator says that there's someone coming through for him with a dog. A man, but not his father.
One of the reasons that Senator John Edwards faltered in the recent US primaries was that he patted the head of a wheelchair-using voter, who angrily told him that he needed to learn "disability etiquette". We need to be careful of simply patting Jonny Kennedy on the head while watching and writing about this film. His last testament stands as an advance in television's treatment of death, and a tribute to an original, witty, bloody-minded man who was unlucky in everything except his personality and his family.
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The Boy Whose Skin Fell Off will be shown on Channel 4 later this month.
