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Last Updated: Tuesday, 23 March, 2004, 17:04 GMT
The Boy Whose Skin Fell Off
The Boy Whose Skin Fell Off
Follows the last few months of Jonny Kennedy, a 36-year-old in the final stages of a condition called EB, in which the skin constantly sheds itself and the body remains stranded in childhood.

(Edited highlights of the panel's review taken from the teletext subtitles that are generated live for Newsnight Review.)

KWAME KWEI-ARMAH:
(Playwright and actor)

I was extraordinarily moved by this. If I am to be honest, even though I have a medical history on television, I would have switched off had I not had to be here today. I didn't want to see him die, but it was a wonderful testament to humanity and humour, and to just a kind of inner strength that he had, that I did watch this to the end and was moved.

LAWSON:
Natasha, it's hard to know how to react to this because it's very hard not to feel pity, which he clearly wouldn't have wanted. But it's difficult to know how to take it?

NATASHA WALTER:
(Author and journalist)

Absolutely. It is hard to know how to take it. Most of the time you are just swept along with this feeling of just admiration for him, and obviously sympathy with his pain. It's so dreadful to watch the really painful scenes. In a way, it's not so much the death that seems so painful, but the living before the death. These terrible scenes of his mother sort of unwrapping bandages from his back, which are almost unwatchable. That's obviously the dominant emotion, just this sympathy and admiration for his courage and good humour, but I have to be honest and say that at times it was uncomfortable to me in other ways. He obviously felt in control enough to invite the cameras into his life. He wanted that. That doesn't mean that it never felt intrusive, to me, watching that. I mean that scene where he was just saying to his friend, they are just going to be sitting there waiting for me to die, and I think, as a viewer, you are thinking, "Well, yes, I am just sitting here waiting for him to die," and I think that's a very uncomfortable position as a viewer to be in. I don't question his motives in doing it, but sometimes I couldn't help questioning the viewers for what we are getting out of it, and the makers of it for the tone they brought to it.

TOM PAULIN:
(Poet and critic)

Yeah, deeply moving, absolutely heroic figure, heroic mother. An extraordinary film. But like Natasha, I got worried. You know, three months to go, two months to go, two weeks to go. I thought that was in very bad taste. I didn't want that. I felt that was more than intrusive. And of course the voyeurism which is part of it was distressing. I wanted to reach for the book of Job, but ultimately that would be consolatory, and the only consolation was the heroism.

LAWSON:
On the other hand, we don't know exactly know how much control, he clearly wanted the cameras in. He had recorded a voiceover which plays over these extraordinary opening scenes of his dead body, and the wheelchair, and then suddenly the voiceover comes in. I suspect, in fact, the tone of it was what he wanted, which is what makes it extraordinary.

WALTER:
Yeah, but I suppose because he is dead we just can't be sure. That's maybe what makes us so uncomfortable. There are times when the interviewer comes in in ways that I find - I mean, I thought it's fine for him to say, "In my situation, masturbation is hard," but it's very difficult when the interviewer breaks in and says, "So do you fancy now?". I found that kind of thing very difficult when the tone is sort of broken by the interviewer.

KWEI-ARMAH:
I actually didn't like the voiceovers. By the time I got to the end and I heard that final one, I was a bit like, "No, I don't want to hear his voice now. He has gone and he is resting. I don't really want to go there. Where are you taking me?"

LAWSON:
I have written about television for 20 years now and I have never seen anything quite like this.

KWEI-ARMAH:
I would agree. I wouldn't have watched this to the end because I found it harrowing. I didn't want to see someone die on television. I didn't want to see it for real. I didn't want him to take me there, and I found it quite disturbing actually. I was more unsure actually why it was made. I know he wanted it to be made, but I found myself questioning the film.

LAWSON:
And he wants to publicise his charity.

WALTER:
Yes, and that is no doubt a good thing. You do wonder what kind of palliative care the guy was getting when he has just got his mother looking after him. And hopefully, you know, the charity will do something to help others.

LAWSON:
My only worry about it is, we talked a lot about the tone of this, is that while it's incredibly frank and there is a scene of quite astonishing medical frankness when he has his body bandages removed, there is a slight suspicion at the end that somehow it presents his death as a success, in effect, because it's gone the way he wanted, and that did worry me.

PAULIN:
Well, it culminates in Downing Street, which is very moving to see him get there, and of course to represent the charity and a condition I had never heard of until this film was made, so it's doing very important work like that.


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