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Despite seeing the world in “blurry outlines,” eighth-grade student Lan Jui-yu (藍睿瑜) has become a math and science whiz, well on his way to fulfilling his dream of becoming an ophthalmologist. Lan has Marfan syndrome, a genetic condition affecting the connective tissue that is often associated with impaired eyesight. It was only after his mother passed away when he was four that Lan learned he had the condition, she did. Marfan syndrome is also characterized by overly long and flexible limbs. Lan at 15 is 1.8m tall. As his heart valves are at risk of detaching, Lan must avoid collisions and strenuous exercise. During gym ....
A little over month ago, I found myself traveling to rural Anhui province. Coal+Ice, the documentary photography exhibition I had produced for Asia Society, had been invited to exhibit at the Yixian International Photography Festival. Logistically, this exhibit proved a daunting feat. Fifteen massive crates of photographs were driven all day from Beijing to Pingshan Village, where the power of ten men would carry each crate 500 meters down a rocky hill to the exhibition space, an ancestral hall that dates to the late Ming dynasty. I calculated our exhibition’s wattage needs and we borrowed electricity from the farm next door. Five villagers became our art handlers. We had only one week to install. On the day before the opening, we still had about two more hours of installation ahead of us when we discovered the festival had been “postponed” by the county government. ....