Sublime

The possibility for inventions in her own work lay right in front of her, she saw, ready to be cobbled together, but they also required not just mechanical ability but a mechanical disposition: the ability to see what was necessary and then proceed to build it, switching directions as trial and error required.

Families of kids with STXBP1 post updates about their children’s “‘inchstones’ rather than milestones,” she told me. It’s a way to signal the different steps in the trajectory they celebrate—and they do celebrate every one.

What the gizmo does or doesn’t do will always pale in comparison to the real miracle at hand—each body, endlessly plastic, responsive, operating with and through technologies of all kinds to get its tasks done in a resourceful mix of workarounds, glitch-ridden patchworks, quick fixes, and slow evolutions.

The condition of disability is present whenever a body finds itself in what scholar Rosemarie Garland-Thomson has called a pointed “misfit” relationship with the world—not the melodrama of a tragedy to overcome, not merely a “defect” of the flesh, but a misfit: a disharmony that runs both ways, body to world and back.

The request also came from Amanda’s wishes. It arose from her imagination—from her sense that the shape of the world might, in a small way, be made more flexible.