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Recipient of the 2019 Creative Bursary: Disability Stories

photography grant from Getty Images and Verizon Media

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Artist Statement

When my younger brother was diagnosed with autism in 2004, I did everything in my power to facilitate his treatment.  At age eight, that meant keeping busy and requesting little.  It meant doing homework in hospital waiting rooms, ignoring the pill bottles that cluttered our counters, and listening to my parents’ hushed conversations about how they planned to pay for all the related expenses.  Once spunky and extroverted, I spent the next several years slipping into a cocoon of quiet observation.


Over the years, I have developed a coherent narrative about how my brother’s autism has shaped me for the better: how witnessing my parents' tireless battle with our public school system taught me the power of advocacy, how caring for a younger sibling developed my own maternal tendencies, and how eventually partaking in intensive home therapies sparked my interest in psychology.  After years of therapeutic and biomedical interventions, my brother defied almost all elements of his prognosis.

There’s a certain convenience in rehearsing this narrative.  It’s easy to talk about adversity when you’re living in its resolution; when you can point to the hard parts and believe they won’t return.  But it’s also easy to seek comfort in a past life when everything about the present seems unresolved.  Metronome attempts to connect these two worlds.  By pairing present-day photographs alongside memories from a past self, I explore what is lost and kept over time.

I start with his old therapy binders.  Stored neatly in our closets, they seemed stale in their documentation of symptoms no longer seen—my brother’s inability to respond to his own name, for instance, or his forced rehearsal of imaginative play.  At the time, I didn’t realize that skills—or the edible treats that reinforced them—could be broken into a thousand pieces.


And so, my project began with grids: systems that track progress precisely in their reduction of human potential.  In all their transparency, these charts — these frameworks of checks and minuses — reveal so little about my brother’s journey.  And yet, they are what started it.  Rigidity ultimately trained my brother to speak; to question; to explore his place in society.  But with liberation comes heartache.  When there are no clear answers, rigidity makes his knuckles bleed.

I, too, am tangled in those grids.  Through photography, I inserted myself into a physical and emotional space that I had been trying to escape for years.  Why, then, do I keep coming back?