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Going Deaf and Blind in a City of Noise and Lights

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She appears at Bloomingdale’s fifteen minutes later, gripping her finger; she has just been sideswiped by a biker, no big deal. We go in search of a can opener. Alexander doesn’t browse. She goes shopping only for specific items. As we slowly make our way up to the household-goods area, she fixates on my face, lip-reading. That’s the way her New York is: one thing at a time, focused.

Her main strategy is pretending that she knows what’s going on, which she’s quite good at. Her facial expression never reveals discomfortyou have to look at her eyes to see them flash disorientation. She nearly walks into a low central table of glass perfume bottles. If she can’t see ahead, she naturally slows so that I walk ahead, and then she imitates. We walk through a nexus of mirrored escalators, luggage, and kitchen supplies, with a checkered black-and-white floor. She nearly walks into a center-aisle perfume display and stops. There’s a lot of glare. And the black-on-black with mirrors look like an optical illusion. I point in the direction we were going, but she doesn’t see. Her doughnut vision cuts me off at the shoulders. She reaches up to feel which way my arm was going. I see pots! Bingo, kitchen area. She scans until she sees the word GADGETS high on a wall. She moves toward the wall, a can opener hanging just past her right shoulder. She scans the wall, moving to the left. A mango splitter? Really? A cherry/olive de-pitter? She grabs interesting items as she moves farther away from the can opener. Maybe they don’t carry them. A minute later, she backtracks. Jar opener! Wait, no, that’s different. And finally she sees it. Success!

Alexander’s saving grace is an excellent sense of directional memory, developed by necessity. She easily directs me out through the maze to the right exit. I rarely get all turned around. If I came from there, I can get back there.

People constantly come into my vision through blind spots, and I’m like, Whoa! Where did you come from?’ 

One of the two New Yorkers with Usher syndrome type III that Rebecca knows is a woman named Cindy who lives in the East Village. Her family has devoted significant funds to researching a way to find a cure. The two are friendly but until recently didn’t talk much about their condition. Pinto, who has battled lymphoma in the past, keeps up with Cindy to discuss developments. Rebecca’s kind of attitude is, I’m living my life, let me know when you have something,’  he says. She still goes about her life as if she doesn’t have Usher’s.

Which is why, for her, the Hell’s Kitchen party is a sea of potentially ugly things to come. She glimpses Marc Grossman as he’s led into a chair by his wife. I’ve seen him so many times, she whispers, but it’s hard to imagine yourself like them until it happens to you. Two years ago, I couldn’t imagine being like I am now. Grossman is the hero of the group, happily married and gainfully employed (the blind have a 70 percent unemployment rate). He began his twenties sighted and ended them blind. When I strike up a conversation with him, he describes his commute. Each morning, he takes the subway to midtown. On the platform, I just kinda bang my cane on the subway until there’s an opening. If there’s no floor, I know I’m between cars. Sometimes I get discombobulated and say, Someone help me find the door!’ and people are cool. He disembarks at 34th Street and Eighth Avenue, a particularly arduous platform with trains on both sides. He runs his cane over the bumps on the edge to orient himself and follows the crowds to the stairs. The station is fuzzy, punctured by lights and high visibility yellow, the color painted along subway platforms that many legally blind people can see. In bad weather, he navigates himself across Penn Station to the Seventh Avenue exit by shorelining, running his cane along a wall or edge. New Yorkers can be overbearingly helpful. They often grab you, says Grossman. It’s just not cool to be grabbed. The best thing is to say, Hi, can I help you?’ Because most of the time, I don’t need help.

As Grossman talks, Alexander zones out. She rarely encounters situations like hisshe eschews her cane so no one knows she’s blind. People constantly come into my vision through blind spots, and I’m like, Whoa! Where did you come from?’ It’s annoying, because people are constantly coming too quickly. People on cell phones, walking too fast, walking too slow. It’s the way this city rolls. On the other hand, it’s not so bad, because everyone here runs into people.


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