The Boy Whose Skin Fell Off

In class we watched a very inspiring documentary called 'The Boy Whose Skin Fell Off'. It is a moving story about the last four months of Johnny Kennedy's life and showed his suffering and long battle with the rare condition - dystrophic epidermolysis bullosa (EB) it also shows his release, his death. To watch the full documentary please follow this link: http://www.channel4.com/programmes/the-boy-whose-skin-fell-off/4od


The documentary has many sensitive issues within it and in class we were asked to think about the following questions and write a response to them. Here are my thoughts on the programme:

Do we have the right to see this?
Whilst this documentary has been made to inform people and raise awareness I believe that some of what was shown shouldn't have been. Johnny clearly worked alongside E4 to create this documentary about his last 4 months and therefore I believe it was his wishes for us to see this footage. In some respects his day to day life and obstacles helped to portray the struggle he went through strongly however, some of these 'day to day' things were perhaps a bit too personal to show. For example seeing Johnny in excruciating pain, I personally found really hard to watch as my heart sank at the thought of him having to go through that on a weekly basis. Also, when Johnny's Mum mentioned being asked if she would have had an abortion I thought was a very personal thing to show to millions of people and was perhaps overstepping the line in terms of what they are sharing about such sensitive issues. Finally, although seeing Johnny dead in his wheelchair and viewing his funeral was deeply upsetting and emotional for us as the audience I feel we shouldn't have seen this not for our sake but the families. Us seeing this footage meant that they were not left to grieve at such a sad time but instead surrounded by camera men and crew member, this I felt was particularly insensitive. Having said this and stated some negative points my overall feel is that the documentary was an amazing opportunity for Johnny and other EB sufferers and that it was clearly made with the wishes of a dying man and I therefore agree that E4 should of and did respect what he wanted.

Should they be filming this?
The first time we are introduced to Johnny is in his voice over. The voice over has been scripted so that Johnny sounds as though he is speaking from the grave; to me this is slightly insensitive; however, I think maybe it is the tactfulness of the filming rather than the content. Having said this he may have decided he'd rather approach the touching story in a more informal way. 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. Obviously E4 made money out of the documentary but I think the morals and ethics behind using this story for their personal profits are completely thrown out the window when you think of the difference the documentary has made to: the charity through donations, sufferers through educating people about their condition and maybe the most touching outcome, Johnny Kennedy by telling sharing his story at such a hard and emotional time.