"The Boy Who's Skin Fell Off"

In class we watched a documentary called, "The Boy Who's Skin Fell Off". It is hard hitting emotional story about the last four months of Johnny Kennedy's life and showed his suffering and long battle with his rare condition called Dystrophic Epidermolysis Bullosa (EB). If you would like to watch this documentary I have put a link below.

http://www.channel4.com/programmes/the-boy-whose-skin-fell-off/4od

The documentary contains main sensitive issues in it and we were asked to think about the following questions and write a response to them. These are the comments that I made about the doc.

Do we have the right to see this?

First, I think this documentary was made to raise awareness of this condition and to give the viewer a taste of what its like to have a condition like this. It was very informative and gives strong emotion viewpoints of the people involved with Johnny's life. However Johnny worked closely with channel 4 to create this documentary so because of this I believe he wanted people to see the struggles he faced. I believe however that some aspects of his life shown were not necessary, for example him being in excruciating pain and his mother being asked whether she considered keeping johnny when she was pregnant with him. These are very sensitive things to watch and hear. Finally, As I know the documentary is for educational purposes, at the time of his death to have film crews around this situation must have been hard for his family to be able to grieve in private.

Should they be filming this?

The first time we hear johnny speak is through a voice over, The voice over has been scripted as if he is speaking after death, this means that the producers would have got Johnny to read this before he died making him feel even worse about his life threatening condition, I think this is insensitive to him and the viewers.  Although my immediate thought was that some of the filming wasn't very tactful Johnny has clearly 'asked us along for the ride' and after seeing a little more I get the impression that perhaps Johnny worked with producers to create this feel as it helps to reflect the way he approached this awful condition. Obviously there are some aspects of the filming that are more upsetting than others (such as: when Johnny gets upset, when he's telling us of the worst parts of his journey and when we see his dead body) however, I think without some of these parts we would not understand fully the terrible ordeal Johnny had gone through.

Was it a valid documentary?


I believe the documentary was very valid. Not only does it help with the awareness of rare condition EB it also helps to promote his charity. Unfortunately, it is very rare that people donate to worthy causes unless they feel some sympathy for the cause; this was shown when £500,000 was raised through the help of the 5 million viewers. This documentary allows the audience to connect with Johnny and I feel that many people will both take something from it and give something back. I personally have learnt a lot about a rare condition that I previously knew nothing about and have acknowledged a worthy charity (DEBRA) through this documentary.

Did they take advantage of the situation?

I definitely think they took advantage of the situation because it is such a rare condition that it would be hard to find someone willing to help to make a documentary and that has put so much time and effort into helping others who have the condition. However, I don't think that taking advantage of it was all bad; through the documentary Johnny not only got to educate and inspire millions with his story but he managed to raise thousands of pounds and promote his charity