Caring for Zora

A CLOSER look at the relationship between a child and her caretaker; a child and her first friend. Documenting these moments helps to challenge stereotypes surrounding disabilities, and demonstrates that a life with disability is not defined by sorrow.

This project aims to celebrate the life of Zora, a two year old girl living with LMNA. LMNA is a rare muscle disorder which limits her mobility and leaves her health at risk. As Zora’s caretaker, I want to show you what I see. A child with the right to every opportunity to Play, and experience celebration just as children should. While also advocating for Zora's autonomy and the autonomy of all people (and children) with disabilities.

Caring for Zora is an intimate documentation of a child and her caretaker. A child and her first friend. Documenting these moments helps to challenge stereotypes surrounding disabilities, and demonstrates that a life with disability is not defined by sorrow or limitations. 

Central to the project is the concept of agency for Zora. Despite her limited mobility, the project seeks to empower Zora by giving her control of the ways in which she is represented. By giving Zora the shutter release she is allowed to take her own self portraits; therefore, she chooses the moment in which the photograph is made. 

It felt important for the work to be a true collaboration. This also meant that it has been made at Zora’s pace. When she felt comfortable enough around the camera, we began to shoot. Caring for Zora has been made with her, and for her.

My work as a caregiver is much more than a job. It is love, care, fear, friendship, teaching, learning, and letting go; it is a sense of family. It is to be mentioned that due to Zora's fragile life, this work is also an act of preservation. The act of preserving a life before it is over.

This project is ongoing. Including unfinished objects, audio video, and Zora's drawings (utilizing the movement she has left in her hands).