The Boy Whose Skin Fell Off

Ever since the Mitchell And Webb boys did that spoof documentary talking about so-called ‘body horror’ docs, the name of this, one of the first, seems ever more brash and headline grabbing. And indeed, it begins startlingly, in what’s an apparently mundane moment of family life that unfolds before you realise that there is a corpse in the room.

Johnny Kennedy suffered from Epidermolysis Bullosa, a tissue disease that makes the skin very fragile. The title of this documentary may seem crass, but it is entirely accurate. The man - he was 39 when he died, but physically was unable to progress past puberty - was in severe discomfort for his entire life.

This is a documentary, but it shares a great deal with American Beauty, in that it is narrated by someone we already know to be dead. It was Johnny’s idea, as soon as he discovered the calendar of his own demise - he’s given four months to live - to film the end of his own life, his attempts to raise public awareness of EB, and his determination to hold court at 10 Downing Street, even if - as it’s noted - it kills him.

‘People, even in this day and age are scared of death - and it’s a shame, because it’s part of life. So, let’s get it right.’

Johnny was probably the first high-profile person to advocate the concept of a ‘good death’, not in the sense of an assisted death, but having the opportunity to plan the manner of his funeral, the things that he’ll do before it’s literally too late, and ensuring that people like his brother speak over his coffin. A coffin which, he impishly decides, will have a picture of a can of beans on it - for no reason other than to make the mourners wonder why he had a picture of a can of beans on his coffin.

The dead to tend to gain halos, but it’s probably deserved in Jonny’s case. There’s an excellent and mordant wit to him throughout - whether it’s moving Nell McAndrew to tears and then looking down her top (and cheekily showing off to camera) or comparing his own condition to his friend (Lord Rupert Reesdale) being a member of Parliament ‘.. and that’s your affliction’.

In the end, however, this is a documentary not about skin disease, not even about death, but love, respect, and about the importance of family.

‘I’m Johnny Kennedy, and this has been my story...‘



Released on DVD on 19th April 2010 by Revelation Films.

Reviewed by Andrew Allen.