From Maisie Crow:
I first met Max when I was out on a daily assignment at Chimes School, a private institution for disabled students in Baltimore. After visiting a classroom where Max was working one on one with an instructor, I was intrigued by his behavior and curious as to why he was a student at the school. I connected with him immediately and my intuition told me to learn more about his situation. I asked the principal why he was at the school, but she could not give me too much information without his father’s consent so I left my business card with her in hopes she would keep her promise and pass my contact information along. In early December, I heard from Lon, Max’s father, who said he would be willing to talk with me further about Max and Prader-Willi Syndrome. He told me all about it the disorder and Max’s behavior issues. At the time, it was beyond my comprehension. How could someone always be hungry?
Prader-Willi Syndrome, PWS, is a rare-genetic disorder caused by variations in the fifteenth chromosome. Not only does PWS cause Max to have an insatiable appetite, it creates behavior disorders that can be hard to control. Lon understood from the beginning that I would have to document the behavior and the incessant eating.
One day, Max came home from school very upset that they had changed his school aide. Lon called me and suggested I come over, as he knew I needed the content to solidify the story. Filming video that day was difficult because I wanted to comfort Max. After spending so much time with Max and his father, I viewed them as friends as much as I did subjects. I felt helpless and wanted to do more than film what was happening but I also realized that my purpose as a journalist was to document their lives in order to share their story with others. I wanted the content to allow the viewer to feel the helplessness that I did at that moment.
I did not start any of the interviews until I was fairly close to being done shooting because I wanted to wait until Lon and Max were completely comfortable with me. Once they were able to trust me, they were more candid and open to sharing their emotions and feelings. Interviewing Lon was difficult at times because I wanted to put down the mic and just talk with him about what he was going through. At one point, I asked Lon if he had anything he wanted to add to the interview and he talked for nearly thirty minutes. He said, “In the past, it was always kids with Prader-Willi Syndrome are short, fat and retarded, and they’re not short and fat…and retarded.” It took Lon almost 10 seconds to say the last word of that sentence. His eyes started to water, and he almost couldn’t finish his thought. Those seconds of silence nearly broke my heart but they also created a pivotal point in the story. I used the silence in the multimedia piece with hopes that the viewer would pause, reflect and empathize with what Lon was trying to say. The audio allowed my subjects to have voices and narrate their own story. What they had to say was much more than my photos could ever give.
After observing Max and his father, I knew that the story wasn’t only about the disorder. It was about a relationship, and in order to show that I would have to spend a lot of time getting to know the two of them and letting them know me. Through watching Lon raise Max, I witnessed the lengths that a father’s love would go to care for his son.
I built a relationship with Max and his father. That is why I could enter their home, tell their story, share it with the community and hope that it provided an understanding of two special lives and a little known disorder.
Posted by: B Foster