2217

This new series is part of an ongoing attempt to make visible what is often rendered invisible by societal conventions, particularly our most significant — and generally private — bodily experiences.

2217 features four individuals, including my youngest brother, with Neurofibromatosis (NF) — the most common genetic disorder. Neurofibromatosis causes tumors to grow throughout the body and can present itself in varying degrees. While NF is typically passed on from one or both parents, 50% of cases are spontaneous mutations– a mutation of gene 17 causes NF 1 and a mutation of gene 22 causes NF 2.

These nearly life size color portraits invite the viewer to investigate the image before them. Rather than be inhibited by their illness these individuals willingly pose for the camera, unabashed by their appearance. Moreover, they elicit the viewer’s curiosity with the hope this investigation will lead to awareness and compassion. However, the gaze is bittersweet. You are not the first person to stare or turn away. These four individuals have been surveyed their entire life, peered over by specialists as well as the general public.

Drawing upon the imagery and history of medical illustration, these portraits also engage with the ethics of photographing patients to display their diseases, and they point to questions about the agency of the photographer and the photographed.

2217 will continue to document how these individuals manage their illness and the transformation of their bodies as they are shaped and manipulated by NF.