I love New York. When I was younger, the city was my playground. On any given weekend you could find me catching brunch with a friend at a café, going to an East Village restaurant for dinner and then hopping the subway, headed to a nightclub in Chelsea. But at age 25, 10 years ago, I was told I had multiple sclerosis, and I saw my freedom vanish. All of a sudden, I found myself using a walker — now I use a motorized chair — and planning daily activities with precise schedules and strategies for getting from one place to another, trying to maintain some semblance of the spontaneous city life I loved to live.
I wanted to capture this transformative experience — becoming disabled — in When I Walk because I hadn’t seen it portrayed before, and people need to see how a degenerative disease impacts the lives of those living with it. The first scene in the film is of me on the beach with my family. I brought my camera along to film the get-together, but the footage we captured meant more than I could have imagined: I fell down and couldn’t get back up. It was the very first time my M.S. made something in my life go completely awry — the first time it made itself visible and impossible to ignore. What was supposed to be a nice family vacation turned into the inciting incident. Soon after, encouraged by my family, I chose not to ignore my M.S., but to turn my camera on it instead. I had made films all my life, so making a film about the progression of the disease seemed a natural way for me to process the journey.
Documentarians often want to build trust and acceptance with their subjects. Being that I was the subject of my own film, and that I didn’t yet have that acceptance of myself, the filmmaking was arduous at first. There was always the internal struggle of putting myself on camera and deciding how much of myself I wanted to reveal. As I got worse and worse, reviewing the footage became emotionally difficult and physically draining. Living my life in the present while also reflecting upon it creatively, actively editing it and putting the pieces together in real time, put me in a psychological feedback loop that was tricky to negotiate. Every night after filming and editing, I would have dreams of being able to walk; then I’d wake up unable move and start the process of filmmaking all over again.
It was also difficult to be forced to hand the camera over to my brother, my mother, my filmmaker friends and my non-filmmaker friends. This was necessary partly because of my M.S. (my vision was getting worse), but also because being in a shot meant that I couldn’t capture it myself. This was perhaps the most frustrating part of making this film. I used to have total control over the camera and I was a meticulous shooter, so you can imagine that trying to give on-the-fly lessons in visual composition and camera exposure to my mother was torture! The beautiful cinematography of my past was sacrificed, and capturing emotion became my priority. I found a new love for the expression of emotion, the subtlety of story and quietly compelling moments of human experience.
I’ve discovered that and other new loves since we began filming When I Walk. These days, I’m working on developing AXS Map, a crowd-sourced online tool for sharing reviews on the wheelchair accessibility of buildings in New York City. And while I miss the incredible spontaneity and unlimited access to the city I once had, my diagnosis was not the end of the world. Instead, with a bit of determination, it has provided a new way for me to see and be in the world. This was the basis for the voice and heart that emerged in the film, almost as though the film itself willed it. As director, my role was to foster that spirit, to learn to adapt and to enjoy the ride.
— Jason DaSilva, Director/Producer, When I Walk