Toward an Aesthetic of Osteogenesis Imperfecta is grounded in issues of visibility, seeing, and visual representations of ability-related diversity. Born non-visibly disabled, I manage multiple, incurable, very rare diagnoses while often passing for fine, a circumstance that confounds many notions of sickness, diagnosis, and identity. This work emerges from the spaces between my visible appearance, my internal, genetic reality, and the social experience of being disabled in a deeply ableist world. I offer these images with a desire to counter dominant, frequently negative, visual representations of diagnosed bodies.  

A lifetime lived in a body over which I have little control and that doesn’t look like a primary feature of what it is has led me to question superficial appearances and reflect on the ways in which many things are much more complex than they seem. I’m drawn to photography, a medium of skins and surfaces, because within it and its wide reach I see so much potential for a powerful expansion of what disability can look like and, through this, how it is conceived. 

When someone learns I’m sick they often ask, “What’s wrong with you?” and my response to this charged question is these pictures. I make photographs of plants and forest structures I encounter on prescribed daily walks, often using a shallow depth of field. While recognizable elements remain, parts of each image melt into abstraction or become obscured. Rendered this way the botanical structures, a stand-in for me, surface models of 1) the inscrutable spaces I daily occupy, 2) psychological experiences of otherness, and 3) my wonky internal conditions as I imagine them. 

Through this work I offer the viewer an experience of indistinct looking centered in metaphor and a photographic representation of disability rooted in the mysterious, obscure terrain in which non-visible chronic illness can expertly traffic. I hope you see the images as by turns challenging, resistant, beautiful, and weird. I hope the work foregrounds for you the presence and value of the unknown. 

The average human body contains 204 bones. This ongoing project will, in its final iteration, contain 202 pictures (one for every bone I have—Google osteogenesis imperfecta and this will make sense) and 2 as-yet-incomplete images in reference to the 2 prosthetic bones I use.