Documentary Research- 'The Boy Whose Skin Fell Off'

In Friday’s lesson, on the 21^st June, we watched a channel four documentary ‘The Boy Whose Skin Fell Off’, a very moving piece following the last four months of Jonnny Kennedy’s life. Kennedy suffered from dystrophic epidermolysis bullosa (EB), a rare inherited condition and eventually dies of skin cancer from the condition. The documentary portrays his suffering and freedom in death. To watch the documentary please follow this link http://www.channel4.com/programmes/the-boy-whose-skin-fell-off/4od 

Many controversial issues are raised in the documentary, including:

·         Death

·         Suffering

·         Family

·         Religion/beliefs

·         Disability

·         Abortion

·         Charity

·         Independence

·         Relationships

Although death is initially shown at the start, the other issues contextualise it and paint the bigger picture. The issues raised were both personal (his beliefs of afterlife) and conflicting issues (abortion).

When making a documentary like this, with so many issues raised, we are made to question many things, such as:

Do we have a right to see this?

Should they be filming this?

Was it a valid documentary?

Did they take advantage of the situation?

Do we have a right to see this?

I believe we do have right to see this, as Jonny clearly gave informed consent and allowed the production crew to follow his life. However, at times I think too much was shown, for example seeing his dead body. Although he looked so peaceful and it was very moving to see him at ease, I think that time was very momentous to his family and they should have been left alone to grieve. I also felt discomforted seeing Jonny in such pain (e.g. when changing his bandages), but I understand it adds to the audiences ability to sympathise with him and realise how much pain he was exposed to on a day-to-day basis. It also puts into context some of the issues raised, like when his mother says she would have aborted him. Although I thought that was an awful thing to say I could understand and see the pain his was under, her commitment to him and why she would say that. By the audience seeing this pain we could fully context with Jonny. It left me resenting the truth of his death, although I knew from the start he would die, because I could connect with him, when it came to the end I didn't want to believe he had.

Should they be filming this?

At the start of the documentary the narrator states that Jonny asked them along for the ride. So yes, I do think they should be filming this. It was obviously something Jonny wanted to be shown. I think it promotes his charity work and the condition, which admittedly I had not heard of before the documentary. After seeing it I have gained so much respect and sympathy for those who have to suffer with EB and have visited his charity website to find out more information on it (http://www.debra.org.uk/). I also think it is nice for his family, as a memory souvenir of his bravery, tackling life being disabled.

Was it a valid documentary?

I feel it was a valid documentary, I assume Jonny Kennedy’s main aim was to promote his charity and raise awareness of his condition, and that was certainly done. The documentary attracted around 5 million viewers and helped to raise £500,000 for DebRA. I definitely think the documentary was both inspiration and educational. It also made me appreciate my life and the things I am able to do, which Jonny could not. It is a very accurate representation of the good and bad times he had to overcome in his last four months alive.

Did they take advantage of the situation?

I think to some extent they did, because it’s such a rare, shocking condition and such controversial issues arose, it was evidently going to attract a wide audience. However, I think it was very respectful in depicting these issues by showing the wider picture and being such a well rounded story. If it had portrayed Jonny as mentally incapable I think it would have definitely taken advantage of the situation, but he was not. He was shown as a very caring, funny and knowledgeable man who was ready for death and was prepared for his time to come. 

I thought the documentary was a really well put together production, it has made me think more about the documentary brief. I think doing a documentary would be really interesting, however, I will need a well rounded story and an interesting topic to cover to make it successful.