Whose Story Is the Work?

Overview

Artists with intellectual disabilities at HeartShare make paintings that other people usually describe for them. For my master's thesis I started by putting that authorship back with the artists. One painting we had read as a dreamcatcher was, in the artist's own words, a pirate ship, and that single correction rewrote the entire description. From there the work grew into a framework I developed with HeartShare: treat each artwork as a package with multiple entry points, an audio piece, a poem, a piece of music, a tactile version, so that people with different abilities and preferences can each find their own way into the same work. The companion pieces never replace the painting. They open more doors to it.

The question

Descriptions of art made by people with intellectual disabilities are usually written by curators and staff, not by the artists. I wanted to learn what changes when the artists describe their own work, and then how to share that work with audiences who experience art in very different ways, without flattening it into a single official version.

My role

This began as my master's thesis at NYU, which I led from end to end: framing the question, designing the study, interviewing the artists, and building the first companion pieces. I developed the framework in partnership with HeartShare's accessibility team, within the NYU Ability Project and advised by Dr. Amy Hurst, and the work continued with HeartShare after the thesis.

How I approached it

1. Entered without conclusions. I asked each artist about their own work instead of assuming what it showed.
2. Listened for what was not in the brief. I watched for non-verbal cues, and for whatever the artist became most animated about.
3. Co-created the meaning. I built each description with the artist, so the words were theirs and not mine.
4. Opened multiple entry points. Around each painting I built companion pieces, an audio piece, a poem, a piece of music, a tactile version, so the work could be reached in more than one way.

What I found

When artists author their own work, the meaning changes. A description written for them can be confidently and completely wrong. A description made with them carries what the work actually is.

We had read the painting as a dreamcatcher. The artist told me it was a pirate ship, and that one answer rewrote the entire description.

And one official description, however accurate, still only opens one door. Treating each artwork as a package, with an audio piece, a poem, music, and a tactile version, let people reach the same work in the way that fit them, with no single version standing in for the original.

Impact

The work was showcased at the Artshare Art Exhibit in 2023, and the framework became the standard for how HeartShare presents art now: each piece developed as a package of multiple entry points rather than a single image with one caption. I presented the co-design methods at the New York Alliance for Inclusion and Innovation conference in 2024, and the thesis is featured on the NYU Ability Project site.