When I first started my photography project about my brother, one of my instructors asked me what it was about. I explained that my older brother was low functioning, nonverbal and autistic and I wanted to show his life. “Is your project going to be a mirror or a window?” he asked. I looked puzzled. He tried to clarify, “Are you going to look through a window at him, or will it be a reflection of you?” Seems like a simple question, but I had to really think about it.
How is my project about Michael?
I don’t know anything about Michael even though he is my brother. I don’t even know if it is possible to know him. If that is the case, how could my project be about him? I could literally look at him through the window of my camera. Other people do not seem to have the same problem as I do. The staff at his group home says, Mike’s a nice guy; he loves parties; and so on. I don’t want to assume anything. I want him to tell me. Explicitly.
My project could be a photographic and journalistic documentation of his life. I could show what he does when he gets up; how is his goal of tooth brushing progressing; how his socializing skills are progressing – or not. But I could get this information from his monthly report. I could be a ‘fly on the wall’ and capture meaningful moments with my camera. Who decides what is meaningful, though? Is it the progress he makes in achieving the goals set for him? Is this what his life is about?
What actually is Mike’s life about? He has survived more than 60 years being totally dependent on others. He has had his share of horror, during his time warehoused at Willowbrook, where his daily routine was shrouded in mystery (to me, at least, and I am sure to my parents as well). His monthly injuries were dismissed by the staff; attributed to other patients. More recently he has had careful and humane treatment. Awareness of severely retarded and autistic individuals has thankfully been more the rule than the exception in the past decade or so.
Those who come in contact with my brother seem to enjoy him. I like to think that Mike reminds them of their own humanity.
How is my project not about me?
The theory of quantum physics tells us that the presence an observer changes the outcome of any given event. The same holds for my project. Being in Michael’s presence changes group dynamics. Since Michael never seemed to be aware of me as his brother, or in any other way, at least my presence doesn’t matter to him.
Whatever becomes part of my project is my choice. Therefore, how can this project not be about me? I choose what to include in a photograph (see Cheap Shot). I choose a particular expression to record; I choose when to click the shutter. Even if it is not a conscious decision and my choice is dictated by a feeling, it is my feeling that is expressed.
I want to explore the relationship I have with my brother. Does this mean that my project is a mirror? Whatever I say or portray is my interpretation of Mike’s life. Since he is not capable of telling me about himself, I have to piece it together. How can my project be anything but my mosaic of Michael? What is the truth, anyway?
I conclude that my project is part mirror, part window. My project is like the half-silvered mirrors used in lasers. I hope that the years I spent trying to learn more about Michael, through photographing, journaling, studying brain anatomy, taking part in his care will result in a laser beam of clarity.
If I cannot achieve the coherence of a laser beam, I hope I can at least shine a flashlight’s worth of illumination for fellow siblings of the severely handicapped and others.