My piece “17 Shoelaces” represents the period following my diagnosis with Friedreich’s Ataxia (FA), a neurodegenerative disease causing me poor balance, muscle weakness, and slower speech—most people transitioning to full-time wheelchair use within 10 to 20 years of diagnosis.
Currently, I wear braces to help me walk. However, the first model I wore would rub against my shoelaces, causing them to break every few weeks. I estimate that in the 8-month period following my diagnosis, 17 of my shoelaces broke—8 of which can be seen on the piece.
In addition to mirroring the degradation of my body, my piece represents the kinship within FA and disabled communities. The shoelaces, while broken, are arranged as if they are linked, showing the strength and connection I’ve found within these communities. Arranged on a blue-sky background, the piece looks toward the future, one of hope and progress despite increasing challenges. Looking at my piece, I think of the work both communities have done, and still do, to make new medicine and improve accessibility.
This piece is not intended to be a negative reflection, rather one of gratitude—gratitude that I’m still walking and gratitude for the people in this with me.
Category: 3D Material Art
Rare Disease: Friedreich's Ataxia
Birth Year: 2007
