I have just read Deborah Orr's article ( The Ultimate Invasion of Privacy, 23rd February 2008 ) about "My Street," the film I made for Channel 4. She alerts readers to "a major ethical issue" and claims "It is perfectly clear that, in his awful situation Adam (one of the film's contributors) was in no fit state to sign a release form authorising broadcast." Orr wrongly implies I behaved unethically. If Orr had approached me to check the facts, which she did not, she would have learned that:-
- Adam had Tourette's and OCD. Neither of these conditions deprive someone of their intelligence or their ability to make decisions about their life. Adam was able to give informed consent to be filmed and he did so.
- Before I filmed with Adam I took advice from M.I.N.D. They advised that as he was over 18 (he was 25) and living alone and independently in the community, it was his choice and, significantly his right, to take part in any film and give his own consent to filming and the broadcast of that material.
- Adam talked to his friends, care workers and family about taking part in the film. He wanted to tell his story and show how he lived. Most importantly he wanted us to give an honest and accurate portrait of his life - both the good and the bad.
- Adam called us and asked us to come and film when he was having a particularly bad fit. He wanted people to see what he was going through.
- We only filmed once with a film crew. The other four times were on a small dv camera and for short periods of time. We did not "meticulously record" Adam's breakdown, as Orr suggests.
- In consultation with Adam we agreed what we would and would not show in the final film.
I came to know Adam well over the course of making this film. He welcomed our visits and enjoyed the filming. Deborah Orr presumably did not know him. It is an insult to Adam's memory to claim that his privacy was invaded or that he was incapable of giving consent. It is an insult to all Tourette's sufferers to imply that their condition might debar them from appearing on television.
As well as upholding Adam's right as an individual to have his story shown in accordance with his wishes, the documentary served an important public interest by providing valuable insight into the impact of Tourette's on the lives of those who suffer from it.