I have my mother’s light eyes, my great grandmother’s round nose, and my grandfather’s gift of gab. From my father, I’ve inherited a neuromuscular disorder called Charcot–Marie–Tooth disease.
Because of this, I’ve seen the world from a different perspective than most. Since childhood, I have had to be sharply aware of my surroundings. Details such as little grooves in the pavement or uneven bricks on the sidewalk could make the difference between a pleasant outing and a catastrophic fall.
This, along with my unique physicality, evolved into the desire to document the natural variations of the human body. Photography was the obvious medium, and I realized then that I had the perfect subject for my photographic journey: myself.
I started creating my collection of self-portraits as a therapeutic diary. I knew at a very young age that I did not look like all of the other girls in my town (a place about 1 hour’s drive from New York City). They were the well-heeled children of powerful men and beautiful women. It was a competitive community, and all I saw around me were graceful dancers and well-trained athletes. I, on the other hand, was substantially overweight and much shorter than the rest of the girls. To make matters worse, I was deeply concerned about the neuromuscular disease I was born with which would eventually progress and wither away the muscles in my arms and legs.
I took the photographs in my “Self Portrait” series at the impressionable age of 18, while a student at Bard College. At the time, my concerns were my weight, sex appeal and the progression of my disability. Within these images, I reflect upon my own self control, my insecurities, and the desire to create my concept of the ideal body. By exposing myself to the camera, I was able to embrace what I had, rather than what I didn’t.
This body of work became the jumping-off point for my future work as a portraitist, as I eventually began to feel a strong sense of responsibility to bring awareness to the reality of living in an “imperfect” body. Thus, I started photographing other subjects as well. I hoped to share with my subjects the same healing process that gave me self acceptance and strength.
Yet the more interaction I had with the people I photographed, the more my attraction to their differences began to feel clinical and insincere. My original approach felt as though I was viewing them in the way most other people saw them—judging them solely by their appearance. I wanted to break through this boundary and recognize a richer sense of who they were.
Over time, I realized that with this project, I not only intended to create portraits of disabled people functioning capably in the world; I also wanted to show their life stories. I went into their homes, met their families, held their possessions and heard their stories of perseverance. My hope was to truly capture their spirit and what it was like for them to go through life in an atypical body. I wanted others to experience their “corpoReality.”