Several months ago I received a phone call inviting me to go to Indonesia to help in the making of a documentary for the US satellite and cable television Discovery Channel. Four weeks later I found myself on a plane to Jakarta.

The documentary was about four people, known as the “clan,” who had severe disfigurements. The idea was prompted by an earlier programme that featured the clan when they were part of a travelling freak show, which as a result of the programme was closed down by the Indonesian authorities. It was obvious from video footage of the four that three had neurofibromatosis and one had a skin condition.

I thought the priority would be getting help for the clan members. It soon became clear I was mistaken; obtaining the best footage was paramount. My meeting to examine the clan members was carefully stage managed in an effort to obtain the most striking images and spontaneous reactions from the …