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A Mother’s Steely Portraits of Her Daughter’s Life with Down Syndrome

Photo by Anna Grevenitis

For as long as Grevenitis can remember, being in public with Lulu has brought about a less welcome form of attention. Lulu was born with trisomy 21, or Down syndrome, the most common chromosomal anomaly diagnosed in the United States; the condition, which affects about six thousand American babies each year, causes conspicuous delays in mental and physical development. As a young child, Lulu didn’t notice strangers staring at her in the grocery store or at the movie theatre; now she does, though her reaction to them depends on her mood. “When we’re out,” Grevenitis said, “she either says, ‘Everybody loves me. Everybody’s looking at me,’ or ‘Everybody hates me. Everybody’s looking at me.’ ” Grevenitis’s reaction is a familiar maternal defense: a stare of her own, which usually prompts passersby to check their curiosity and look away.

In “Regard,” a series of black-and-white portraits of her and Lulu, Grevenitis casts the viewer as a gawking onlooker. In each image, she directs a defiant gaze toward the camera, while her daughter goes about the daily routines of a teen-age girl: applying mascara in the bathroom mirror, plopping star-shaped cutouts of cookie dough on a tray, sharing a set of earbuds with her brother on the subway.

Read more in the New Yorker.

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