For Head On 2019 Marc Stapelberg documented the daily routine of Bill Hawkins who suffers from 'locked-in Syndrome'. We asked Stapelberg about his creative process.

What about Bill made you choose him as a subject for your photography?

Almost ten years ago I saw an advertisement for volunteers to help with Bill's physical exercise. I was looking for a project to document. Very nervously I contacted them and asked them if I could come and document what they do as volunteers with Bill. I wasn't sure exactly what it would involve or look like. Nor had I done such a personal project before. Documenting it over three to four days I saw extensively the routine they did and how they cared for Bill. I spoke to Bill's mother and learned more about their daily and weekly schedule, and learned a little more about Bill himself. It was quite overwhelming and confronting. It was much more intense than I expected as I was not able to communicate with Bill himself and was acutely aware that he may not want to be photographed. While I looked for signs that he was ok with it, I could only depend on the family and volunteers to guide me on the ethics of the shoot. In many ways they highlighted the need for volunteers was critical and getting press exposure was vital. Leaving after the week I thanked everyone, processed and published the photos. Deep down I felt I hadn't got to the heart of daily life. So five years later I went back and documented again more of the daily grind including showering, shaving, meal times, etc. This was more difficult as the family and volunteers wanted to make sure I didn't intrude too much. But it was super important to have gone back five years on and then only recently last year. The reason is I was made aware that this condition is permanent for Bill in a way I might not have had I just visited for the one week. Seeing him going through the same exercises and process ten years on really brought home just how incredibly intense and profound the circumstances are.

Why did you choose to present your work in black and white?

I chose to work in black and white as I have always been a massive fan of Magnum, as well the power of having images stripped of color. It forces our brain to process the information in a different way. With black and white, you immediately look at shades of dark and light and where the subject is in relation to those highlights and shadows, There is an incredible moodiness, power, and stillness to black and white imagery. It works very well with still images as it feels as if your eyes can concentrate on it longer, and in a more still and calm manner. Some color photography with heavy shadows does this as well, but I just love the look and feel of black and white and how it conveys the gravity and seriousness of a situation.

What did you want to convey to the audience with your work?

Initially, I was looking to tackle a challenging project, focus on expanding my documentary work and to convey something people hadn't seen. But this focus shifted from me to Bill once I went back for the second time. And more and more I have realised that the passion comes from identifying how incredible someone's story is, sharing it with other human beings and in turn helping in some way however small. I am not sure whether documenting Bill's journey helps apart from possibly getting more volunteers, but increasingly I have felt that his story should be heard by others. I cannot comprehend the mental strength and power needed to mentally survive a life circumstance such as his. His family has shown incredible support and love for Bill by putting everything on hold and the volunteers are critical in helping him to stay healthy. This is a story that deserves to be heard. It is a story of love and connection and continued determination over many many years. There is nothing too fancy - there are no guns, or action or death. Just the steady, slow and determined focus to keep going each day. It is no more or less than others in similar circumstances but it is his story. So to answer your question I wanted to convey the strength of Bill and his family and the volunteers to find a way to make the best out of the worst possible scenario. And perhaps also shed some light on a condition many people may not have heard of. I certainly didn't realise the human mind could still function inside a body which no longer moved at all. I had read The Diving Bell and the Butterfly but this was a slightly different scenario as there was no communication at all.

What was the most difficult part of this project?

The most difficult part of the project is conveying a bit of their world without intruding for too long. And the fact that I wasn't able to communicate with Bill in anyway. I found this to be terribly challenging as I like to check in with people about how they are feeling when I am taking photos.